Guest guest Posted July 31, 2012 Report Share Posted July 31, 2012 Heidi,It is nice to learn more about you. You sound like a very determined and persistent person--those are great qualities to have. I am in both groups, and look forward to the discussion in both of them. I love that people are having success with NFB, and I wish it was an option for me! I am dealing with multiple (close to 10) conditions that affect my daily life, so if I could eliminate one or two, I can't imagine how different life would be. I am hoping for cures for all of them, but I imagine cures are a long way off in many cases. Maybe this isn't the case with misophonia. Just wanted to say " hey " and let you know that I appreciate your hard work and energy! Mae --------------------------------------------------------- ♥ " 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 ♥  I have been posting here for quite some time and want to let you know who I am, why I am here, what my mission is and why I created the google discussion group where we can focus on all treatment options and invite practitioners and researchers into the discussion.  My name is Heidi Salerno. I started out with Hyperacusis when I was very young, florescent lights caused me intense pain, drop on the floor and cry pain.  Around 8 or so I developed Misophonia, unable to properly process the sounds of chewing of both food and gum. As time went out it included bass sounds from stereos,TVs in adjoining rooms, people walking above my ceiling to eventually basketballs bouncing and many other things. One day about 4 years ago my mom found and gave to me an article in a newspaper on Hyperacusis. I immediately went on online and searched the term and read the discussion board and realized that what I had was what they were complaining that other people had, 4S. I quickly found this discussion group and was amazing, as every person here has experienced, that there were others.  At last, I found my people. People who could relate, understand and maybe figure out how to cope.  A year ago February I agreed to be interviewed by Joyce Cohen of the New York Times.  I realized how powerful this piece could be in bringing awareness as I had not been able to unearth any real mainstream coverage on 4S.  While I am a private person by nature, I have been quite public the last 12 years and so I knew I what it would be like to go public with something I really shared only with my immediate family and the people I've dated/married. To help you understand, I am a Deputy Attorney General with the California Department of Justice. I practiced civil defense litigation for 18 years, which means I defended the State and its agencies when it got sued for monetary damages, including a myriad of medical cases. For the last 3 years I have done criminal prosecution.  I am also an International Swing Dance Instructor.  I spent the last 12 years traveling around the world teaching swing dancing to 1000's of people.  Everyone who took my classes knew it was a no-gum zone but no one knew why.  My personal life had been disceted the swing world from the time I became a champion and started traveling and through divorcing my partner and continuing to teach with him.  I was no stranger to gossip and nastiness. So with that in mind, I did the NY Times piece.  The next day the Today show asked me to be on and I readily accepted, again knowing what was in store.  When 20/20 contacted me, I jumped in with both feet, and spend almost 100 hours with the producers helping them put the show in motion.  Why? Because I knew and know that the ONLY way our condition is going to get the scientific research we must have in order to figure out what our problem is and how to FIX it, not mask it, manage it or cope with it, but cure it, is to bring awareness to the general population in order to grow our numbers and with that make it alluring to researchers to want to get their hands on it.  That is my mission, my driving force.  I have learned to cope quite well with Misophonia, I'd say I have been highly functioning but I don't want to just cope, I want us to know what is the source and how to fix it. When Clyle posted last year about Nuerofeedback, I was intrigued.  I decided to save up my money and research the heck out of NFB, given my job I know how to research medical issues and treatments.  I became increasingly interested in it and decided to give it a try.  As time went on I was impress with the changes, at first better sleep, relief in my left hand's essential tremor, better mood (although I'm most always pretty peppy), more motivation, and then it started, I noticed the noises less and didn't immediately respond with fight or flight to my normal triggers.  I was no longer have to cope with it, manage it or mask it.  That is huge.  That is extraordinary.  That is worth shouting from the rooftops over. I know NFB is expensive, especially if not covered by your insurance, I know not every one is willing to do it, but it is extremely promising, and everyone here should be entitled to hear all the details of it and decide for themselves whether it's right for them.  I need to say that I have nothing but the utmost respect for Clyle and his doctor.  My NFB doctor has spent time speaking to his doctor, as well as everybody's here who is trying it and contacted her.  I am forever going to be grateful for his sharing his NFB story with us. I have been speaking to him off this board for over a year now and am very impressed with the lengths to which he attempted at trying to cope, manage and mask his Misophonia. He tried everything for he and his son and never gave up, even when life got very hard and now he and his son are living a Misophonia free life.  Clyle and I don't even see eye to eye on NFB, he and his doctor believe it's OCD related, my doctor and I do not believe it is, and yet, we respect each other and see the importance of talking about NFB.  Our disagreement over the source only serves to further illustrate just how much we need the research, which is vital to understanding this condition. I could easily continue on with NFB until I reach the point of no longer suffering from any Misophonia (which is where based on my progress so far I see NFB taking me) and walk away from this group in an amazing place in life.  But that would not fulfill my mission.  My mission is to get every type of practitioner who can help us with this problem involved, get researchers desirous of conducting studies on us to locate the source of our problem in our brain and help the appropriate medical field eradicate it.  Only we can do this.  Only we can come together and get the scientists and researchers involved.  Think of the amazing strides we have made since before the NY Times piece came out?  It's absolutely amazing and there's no reason to stop.  This is why I created the google discussion group.  To create a place where we can talk about ALL forms of treatments because I believe all brainstorming is good, you must throw it all in to the pot, to find the good stuff.  And to create a place where we can invite practitioners and researchers to observe, ask questions, discuss whatever it takes to get them interested in us, interested in delving into our condition and eventually become desirous of research.  The new google group is Not in competition with this group. Rather it will serve a purpose that, with the membership restrictions here, this group cannot.  That is not a slam on this group, it's a simple fact.  So please do not be upset with the new discussion group, you can participate in both, or just one, or whatever you like.  But the mission is simple: free open discussion of all treatment options with researchers and practitioners admitted to observe, ask questions or discuss at http://groups.google.com/group/misophonia-support.  You don't need a gmail email to join, you can join with any email address.  I chose google groups because it has less kinks than yahoo and I prefer the way the discussion threads are laid out. I hope knowing who I am and why I'm here and what my mission is, will put those of you at ease who think there's a problem, when really there is none. I intend to co-exist at both groups and move forward toward a cure, yes a cure, I will not settle for less. Heidi Gorgeous, youthful skin is waiting for you.  Real science. Real results.www.heidisalerno.nerium.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 31, 2012 Report Share Posted July 31, 2012 Thank you . I always enjoy your posts and keep you in my thoughts for relief from your various conditions. I do hope that happens for you sooner rather than later. Sent from my iPhoneReal Results. Real science. Age-Defying Skin. www.heidisalerno.nerium.comHappy Dancing!www.jitterbal.comOn Jul 31, 2012, at 6:31 PM, wrote: Heidi,It is nice to learn more about you. You sound like a very determined and persistent person--those are great qualities to have. I am in both groups, and look forward to the discussion in both of them. I love that people are having success with NFB, and I wish it was an option for me! I am dealing with multiple (close to 10) conditions that affect my daily life, so if I could eliminate one or two, I can't imagine how different life would be. I am hoping for cures for all of them, but I imagine cures are a long way off in many cases. Maybe this isn't the case with misophonia. Just wanted to say "hey" and let you know that I appreciate your hard work and energy! Mae --------------------------------------------------------- ♥ "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 ♥ I have been posting here for quite some time and want to let you know who I am, why I am here, what my mission is and why I created the google discussion group where we can focus on all treatment options and invite practitioners and researchers into the discussion. My name is Heidi Salerno. I started out with Hyperacusis when I was very young, florescent lights caused me intense pain, drop on the floor and cry pain. Around 8 or so I developed Misophonia, unable to properly process the sounds of chewing of both food and gum. As time went out it included bass sounds from stereos,TVs in adjoining rooms, people walking above my ceiling to eventually basketballs bouncing and many other things. One day about 4 years ago my mom found and gave to me an article in a newspaper on Hyperacusis. I immediately went on online and searched the term and read the discussion board and realized that what I had was what they were complaining that other people had, 4S. I quickly found this discussion group and was amazing, as every person here has experienced, that there were others. At last, I found my people. People who could relate, understand and maybe figure out how to cope. A year ago February I agreed to be interviewed by Joyce Cohen of the New York Times. I realized how powerful this piece could be in bringing awareness as I had not been able to unearth any real mainstream coverage on 4S. While I am a private person by nature, I have been quite public the last 12 years and so I knew I what it would be like to go public with something I really shared only with my immediate family and the people I've dated/married. To help you understand, I am a Deputy Attorney General with the California Department of Justice. I practiced civil defense litigation for 18 years, which means I defended the State and its agencies when it got sued for monetary damages, including a myriad of medical cases. For the last 3 years I have done criminal prosecution. I am also an International Swing Dance Instructor. I spent the last 12 years traveling around the world teaching swing dancing to 1000's of people. Everyone who took my classes knew it was a no-gum zone but no one knew why. My personal life had been disceted the swing world from the time I became a champion and started traveling and through divorcing my partner and continuing to teach with him. I was no stranger to gossip and nastiness. So with that in mind, I did the NY Times piece. The next day the Today show asked me to be on and I readily accepted, again knowing what was in store. When 20/20 contacted me, I jumped in with both feet, and spend almost 100 hours with the producers helping them put the show in motion. Why? Because I knew and know that the ONLY way our condition is going to get the scientific research we must have in order to figure out what our problem is and how to FIX it, not mask it, manage it or cope with it, but cure it, is to bring awareness to the general population in order to grow our numbers and with that make it alluring to researchers to want to get their hands on it. That is my mission, my driving force. I have learned to cope quite well with Misophonia, I'd say I have been highly functioning but I don't want to just cope, I want us to know what is the source and how to fix it. When Clyle posted last year about Nuerofeedback, I was intrigued. I decided to save up my money and research the heck out of NFB, given my job I know how to research medical issues and treatments. I became increasingly interested in it and decided to give it a try. As time went on I was impress with the changes, at first better sleep, relief in my left hand's essential tremor, better mood (although I'm most always pretty peppy), more motivation, and then it started, I noticed the noises less and didn't immediately respond with fight or flight to my normal triggers. I was no longer have to cope with it, manage it or mask it. That is huge. That is extraordinary. That is worth shouting from the rooftops over. I know NFB is expensive, especially if not covered by your insurance, I know not every one is willing to do it, but it is extremely promising, and everyone here should be entitled to hear all the details of it and decide for themselves whether it's right for them. I need to say that I have nothing but the utmost respect for Clyle and his doctor. My NFB doctor has spent time speaking to his doctor, as well as everybody's here who is trying it and contacted her. I am forever going to be grateful for his sharing his NFB story with us. I have been speaking to him off this board for over a year now and am very impressed with the lengths to which he attempted at trying to cope, manage and mask his Misophonia. He tried everything for he and his son and never gave up, even when life got very hard and now he and his son are living a Misophonia free life. Clyle and I don't even see eye to eye on NFB, he and his doctor believe it's OCD related, my doctor and I do not believe it is, and yet, we respect each other and see the importance of talking about NFB. Our disagreement over the source only serves to further illustrate just how much we need the research, which is vital to understanding this condition. I could easily continue on with NFB until I reach the point of no longer suffering from any Misophonia (which is where based on my progress so far I see NFB taking me) and walk away from this group in an amazing place in life. But that would not fulfill my mission. My mission is to get every type of practitioner who can help us with this problem involved, get researchers desirous of conducting studies on us to locate the source of our problem in our brain and help the appropriate medical field eradicate it. Only we can do this. Only we can come together and get the scientists and researchers involved. Think of the amazing strides we have made since before the NY Times piece came out? It's absolutely amazing and there's no reason to stop. This is why I created the google discussion group. To create a place where we can talk about ALL forms of treatments because I believe all brainstorming is good, you must throw it all in to the pot, to find the good stuff. And to create a place where we can invite practitioners and researchers to observe, ask questions, discuss whatever it takes to get them interested in us, interested in delving into our condition and eventually become desirous of research. The new google group is Not in competition with this group. Rather it will serve a purpose that, with the membership restrictions here, this group cannot. That is not a slam on this group, it's a simple fact. So please do not be upset with the new discussion group, you can participate in both, or just one, or whatever you like. But the mission is simple: free open discussion of all treatment options with researchers and practitioners admitted to observe, ask questions or discuss at http://groups.google.com/group/misophonia-support. You don't need a gmail email to join, you can join with any email address. I chose google groups because it has less kinks than yahoo and I prefer the way the discussion threads are laid out. I hope knowing who I am and why I'm here and what my mission is, will put those of you at ease who think there's a problem, when really there is none. I intend to co-exist at both groups and move forward toward a cure, yes a cure, I will not settle for less. Heidi Gorgeous, youthful skin is waiting for you. Real science. Real results.www.heidisalerno.nerium.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 31, 2012 Report Share Posted July 31, 2012 WOW HEIDI, I HAD NO IDEA YOU WHERE SO INVOLVED IN PIONEERING SO TO SPEAK A PATH TO GETTING US ON THE MAP... FOR THAT I THANK YOU...... AND PUTTING YOUSELF OUT THEIR IN THE PUBLIC VIEW... I JUST READ YOUR NOVEL LOL BOTH ME AND MY DAUGHTER AND MY TWIN HAVE MISOPHONIA.. IT SOUNDS AS IF THE NFB IS WORKING..THATS AWSOME... MORE THAN ANYTHING IN THIS WORLD I WOULD LOVE FOR MY DAUGHTER NOT TO HAVE TO SUFFER AS WE DID... HOW LONG HAVE YOU BEEN GOING TO THE SESSIONS?? AND ALSO I HAVE KAISER AND LIVE IN THE SAN FRANCISCO BAY AREA.. KAISER SUCKS.. NEXT OPEN ENROLLMENT IAM SWITCING BACK TO CIGNA....GODBLESS JASON Subject: Who I amTo: Soundsensitivity Date: Tuesday, July 31, 2012, 6:20 PM I have been posting here for quite some time and want to let you know who I am, why I am here, what my mission is and why I created the google discussion group where we can focus on all treatment options and invite practitioners and researchers into the discussion. My name is Heidi Salerno. I started out with Hyperacusis when I was very young, florescent lights caused me intense pain, drop on the floor and cry pain. Around 8 or so I developed Misophonia, unable to properly process the sounds of chewing of both food and gum. As time went out it included bass sounds from stereos,TVs in adjoining rooms, people walking above my ceiling to eventually basketballs bouncing and many other things. One day about 4 years ago my mom found and gave to me an article in a newspaper on Hyperacusis. I immediately went on online and searched the term and read the discussion board and realized that what I had was what they were complaining that other people had, 4S. I quickly found this discussion group and was amazing, as every person here has experienced, that there were others. At last, I found my people. People who could relate, understand and maybe figure out how to cope. A year ago February I agreed to be interviewed by Joyce Cohen of the New York Times. I realized how powerful this piece could be in bringing awareness as I had not been able to unearth any real mainstream coverage on 4S. While I am a private person by nature, I have been quite public the last 12 years and so I knew I what it would be like to go public with something I really shared only with my immediate family and the people I've dated/married. To help you understand, I am a Deputy Attorney General with the California Department of Justice. I practiced civil defense litigation for 18 years, which means I defended the State and its agencies when it got sued for monetary damages, including a myriad of medical cases. For the last 3 years I have done criminal prosecution. I am also an International Swing Dance Instructor. I spent the last 12 years traveling around the world teaching swing dancing to 1000's of people. Everyone who took my classes knew it was a no-gum zone but no one knew why. My personal life had been disceted the swing world from the time I became a champion and started traveling and through divorcing my partner and continuing to teach with him. I was no stranger to gossip and nastiness. So with that in mind, I did the NY Times piece. The next day the Today show asked me to be on and I readily accepted, again knowing what was in store. When 20/20 contacted me, I jumped in with both feet, and spend almost 100 hours with the producers helping them put the show in motion. Why? Because I knew and know that the ONLY way our condition is going to get the scientific research we must have in order to figure out what our problem is and how to FIX it, not mask it, manage it or cope with it, but cure it, is to bring awareness to the general population in order to grow our numbers and with that make it alluring to researchers to want to get their hands on it. That is my mission, my driving force. I have learned to cope quite well with Misophonia, I'd say I have been highly functioning but I don't want to just cope, I want us to know what is the source and how to fix it. When Clyle posted last year about Nuerofeedback, I was intrigued. I decided to save up my money and research the heck out of NFB, given my job I know how to research medical issues and treatments. I became increasingly interested in it and decided to give it a try. As time went on I was impress with the changes, at first better sleep, relief in my left hand's essential tremor, better mood (although I'm most always pretty peppy), more motivation, and then it started, I noticed the noises less and didn't immediately respond with fight or flight to my normal triggers. I was no longer have to cope with it, manage it or mask it. That is huge. That is extraordinary. That is worth shouting from the rooftops over. I know NFB is expensive, especially if not covered by your insurance, I know not every one is willing to do it, but it is extremely promising, and everyone here should be entitled to hear all the details of it and decide for themselves whether it's right for them. I need to say that I have nothing but the utmost respect for Clyle and his doctor. My NFB doctor has spent time speaking to his doctor, as well as everybody's here who is trying it and contacted her. I am forever going to be grateful for his sharing his NFB story with us. I have been speaking to him off this board for over a year now and am very impressed with the lengths to which he attempted at trying to cope, manage and mask his Misophonia. He tried everything for he and his son and never gave up, even when life got very hard and now he and his son are living a Misophonia free life. Clyle and I don't even see eye to eye on NFB, he and his doctor believe it's OCD related, my doctor and I do not believe it is, and yet, we respect each other and see the importance of talking about NFB. Our disagreement over the source only serves to further illustrate just how much we need the research, which is vital to understanding this condition. I could easily continue on with NFB until I reach the point of no longer suffering from any Misophonia (which is where based on my progress so far I see NFB taking me) and walk away from this group in an amazing place in life. But that would not fulfill my mission. My mission is to get every type of practitioner who can help us with this problem involved, get researchers desirous of conducting studies on us to locate the source of our problem in our brain and help the appropriate medical field eradicate it. Only we can do this. Only we can come together and get the scientists and researchers involved. Think of the amazing strides we have made since before the NY Times piece came out? It's absolutely amazing and there's no reason to stop. This is why I created the google discussion group. To create a place where we can talk about ALL forms of treatments because I believe all brainstorming is good, you must throw it all in to the pot, to find the good stuff. And to create a place where we can invite practitioners and researchers to observe, ask questions, discuss whatever it takes to get them interested in us, interested in delving into our condition and eventually become desirous of research. The new google group is Not in competition with this group. Rather it will serve a purpose that, with the membership restrictions here, this group cannot. That is not a slam on this group, it's a simple fact. So please do not be upset with the new discussion group, you can participate in both, or just one, or whatever you like. But the mission is simple: free open discussion of all treatment options with researchers and practitioners admitted to observe, ask questions or discuss at http://groups.google.com/group/misophonia-support. You don't need a gmail email to join, you can join with any email address. I chose google groups because it has less kinks than yahoo and I prefer the way the discussion threads are laid out. I hope knowing who I am and why I'm here and what my mission is, will put those of you at ease who think there's a problem, when really there is none. I intend to co-exist at both groups and move forward toward a cure, yes a cure, I will not settle for less. Heidi Gorgeous, youthful skin is waiting for you. Real science. Real results. www.heidisalerno.nerium.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 1, 2012 Report Share Posted August 1, 2012 ,This was a major group effort. Back then we were writing to Oprah and anyone else we could think of. Joyce sort of found us and I answered her call for an interview and she happened to use my quotes, so it was she who put us on the map. I am at my 25th, I think, session. My NFB doctor is determined to have me at 100% by session 30, we'll see. :-)I am starting my 6 year old daughter on NFB as a preventive measure against my Misophonia and her dad's ADD. I have no idea if Kaiser has NFB but you can start laying the ground work now with Cigna by finding a certified provider and then calling Cigna and just ask if that provider is covered, you don't need to get into the why, just find out if s/he is covered.Heidi WOW HEIDI, I HAD NO IDEA YOU WHERE SO INVOLVED IN PIONEERING SO TO SPEAK A PATH TO GETTING US ON THE MAP... FOR THAT I THANK YOU...... AND PUTTING YOUSELF OUT THEIR IN THE PUBLIC VIEW... I JUST READ YOUR NOVEL LOL BOTH ME AND MY DAUGHTER AND MY TWIN HAVE MISOPHONIA.. IT SOUNDS AS IF THE NFB IS WORKING..THATS AWSOME... MORE THAN ANYTHING IN THIS WORLD I WOULD LOVE FOR MY DAUGHTER NOT TO HAVE TO SUFFER AS WE DID... HOW LONG HAVE YOU BEEN GOING TO THE SESSIONS?? AND ALSO I HAVE KAISER AND LIVE IN THE SAN FRANCISCO BAY AREA.. KAISER SUCKS.. NEXT OPEN ENROLLMENT IAM SWITCING BACK TO CIGNA....GODBLESS JASON Subject: Who I amTo: Soundsensitivity Date: Tuesday, July 31, 2012, 6:20 PM I have been posting here for quite some time and want to let you know who I am, why I am here, what my mission is and why I created the google discussion group where we can focus on all treatment options and invite practitioners and researchers into the discussion. My name is Heidi Salerno. I started out with Hyperacusis when I was very young, florescent lights caused me intense pain, drop on the floor and cry pain. Around 8 or so I developed Misophonia, unable to properly process the sounds of chewing of both food and gum. As time went out it included bass sounds from stereos,TVs in adjoining rooms, people walking above my ceiling to eventually basketballs bouncing and many other things. One day about 4 years ago my mom found and gave to me an article in a newspaper on Hyperacusis. I immediately went on online and searched the term and read the discussion board and realized that what I had was what they were complaining that other people had, 4S. I quickly found this discussion group and was amazing, as every person here has experienced, that there were others. At last, I found my people. People who could relate, understand and maybe figure out how to cope. A year ago February I agreed to be interviewed by Joyce Cohen of the New York Times. I realized how powerful this piece could be in bringing awareness as I had not been able to unearth any real mainstream coverage on 4S. While I am a private person by nature, I have been quite public the last 12 years and so I knew I what it would be like to go public with something I really shared only with my immediate family and the people I've dated/married. To help you understand, I am a Deputy Attorney General with the California Department of Justice. I practiced civil defense litigation for 18 years, which means I defended the State and its agencies when it got sued for monetary damages, including a myriad of medical cases. For the last 3 years I have done criminal prosecution. I am also an International Swing Dance Instructor. I spent the last 12 years traveling around the world teaching swing dancing to 1000's of people. Everyone who took my classes knew it was a no-gum zone but no one knew why. My personal life had been disceted the swing world from the time I became a champion and started traveling and through divorcing my partner and continuing to teach with him. I was no stranger to gossip and nastiness. So with that in mind, I did the NY Times piece. The next day the Today show asked me to be on and I readily accepted, again knowing what was in store. When 20/20 contacted me, I jumped in with both feet, and spend almost 100 hours with the producers helping them put the show in motion. Why? Because I knew and know that the ONLY way our condition is going to get the scientific research we must have in order to figure out what our problem is and how to FIX it, not mask it, manage it or cope with it, but cure it, is to bring awareness to the general population in order to grow our numbers and with that make it alluring to researchers to want to get their hands on it. That is my mission, my driving force. I have learned to cope quite well with Misophonia, I'd say I have been highly functioning but I don't want to just cope, I want us to know what is the source and how to fix it. When Clyle posted last year about Nuerofeedback, I was intrigued. I decided to save up my money and research the heck out of NFB, given my job I know how to research medical issues and treatments. I became increasingly interested in it and decided to give it a try. As time went on I was impress with the changes, at first better sleep, relief in my left hand's essential tremor, better mood (although I'm most always pretty peppy), more motivation, and then it started, I noticed the noises less and didn't immediately respond with fight or flight to my normal triggers. I was no longer have to cope with it, manage it or mask it. That is huge. That is extraordinary. That is worth shouting from the rooftops over. I know NFB is expensive, especially if not covered by your insurance, I know not every one is willing to do it, but it is extremely promising, and everyone here should be entitled to hear all the details of it and decide for themselves whether it's right for them. I need to say that I have nothing but the utmost respect for Clyle and his doctor. My NFB doctor has spent time speaking to his doctor, as well as everybody's here who is trying it and contacted her. I am forever going to be grateful for his sharing his NFB story with us. I have been speaking to him off this board for over a year now and am very impressed with the lengths to which he attempted at trying to cope, manage and mask his Misophonia. He tried everything for he and his son and never gave up, even when life got very hard and now he and his son are living a Misophonia free life. Clyle and I don't even see eye to eye on NFB, he and his doctor believe it's OCD related, my doctor and I do not believe it is, and yet, we respect each other and see the importance of talking about NFB. Our disagreement over the source only serves to further illustrate just how much we need the research, which is vital to understanding this condition. I could easily continue on with NFB until I reach the point of no longer suffering from any Misophonia (which is where based on my progress so far I see NFB taking me) and walk away from this group in an amazing place in life. But that would not fulfill my mission. My mission is to get every type of practitioner who can help us with this problem involved, get researchers desirous of conducting studies on us to locate the source of our problem in our brain and help the appropriate medical field eradicate it. Only we can do this. Only we can come together and get the scientists and researchers involved. Think of the amazing strides we have made since before the NY Times piece came out? It's absolutely amazing and there's no reason to stop. This is why I created the google discussion group. To create a place where we can talk about ALL forms of treatments because I believe all brainstorming is good, you must throw it all in to the pot, to find the good stuff. And to create a place where we can invite practitioners and researchers to observe, ask questions, discuss whatever it takes to get them interested in us, interested in delving into our condition and eventually become desirous of research. The new google group is Not in competition with this group. Rather it will serve a purpose that, with the membership restrictions here, this group cannot. That is not a slam on this group, it's a simple fact. So please do not be upset with the new discussion group, you can participate in both, or just one, or whatever you like. But the mission is simple: free open discussion of all treatment options with researchers and practitioners admitted to observe, ask questions or discuss at http://groups.google.com/group/misophonia-support. You don't need a gmail email to join, you can join with any email address. I chose google groups because it has less kinks than yahoo and I prefer the way the discussion threads are laid out. I hope knowing who I am and why I'm here and what my mission is, will put those of you at ease who think there's a problem, when really there is none. I intend to co-exist at both groups and move forward toward a cure, yes a cure, I will not settle for less. Heidi Gorgeous, youthful skin is waiting for you. Real science. Real results. www.heidisalerno.nerium.com Gorgeous, youthful skin is waiting for you. Real science. Real results.www.heidisalerno.nerium.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 1, 2012 Report Share Posted August 1, 2012 I too would like to thank you for your honesty and determination. I am going back to a Brain State Clinic next week in Austin because a year and a half ago I went, this was before I knew about Misophonia, and it helped a great deal. I noticed when I mentioned Brain State it was not well received by this group for a variety of reasons,all seemed valid. I will continue for now ,based on the success I felt at my first 10 sessions. It is my understanding that NFB and Brain State are one in the same but this may not be the case and I will research this more. I taught in the Public Schools for over 20 years and worked with many students with whom I felt a strong bond, I know now why. I am going to continue to work past retirement focusing on these symptoms as I modify their work and environment.I have had some bright and talented students who failed or never reached their full potential because of this,, I was one and honestly, I don't know how I made it this far!!!!Sent from my iPad I have been posting here for quite some time and want to let you know who I am, why I am here, what my mission is and why I created the google discussion group where we can focus on all treatment options and invite practitioners and researchers into the discussion. My name is Heidi Salerno. I started out with Hyperacusis when I was very young, florescent lights caused me intense pain, drop on the floor and cry pain. Around 8 or so I developed Misophonia, unable to properly process the sounds of chewing of both food and gum. As time went out it included bass sounds from stereos,TVs in adjoining rooms, people walking above my ceiling to eventually basketballs bouncing and many other things.One day about 4 years ago my mom found and gave to me an article in a newspaper on Hyperacusis. I immediately went on online and searched the term and read the discussion board and realized that what I had was what they were complaining that other people had, 4S. I quickly found this discussion group and was amazing, as every person here has experienced, that there were others. At last, I found my people. People who could relate, understand and maybe figure out how to cope. A year ago February I agreed to be interviewed by Joyce Cohen of the New York Times. I realized how powerful this piece could be in bringing awareness as I had not been able to unearth any real mainstream coverage on 4S. While I am a private person by nature, I have been quite public the last 12 years and so I knew I what it would be like to go public with something I really shared only with my immediate family and the people I've dated/married.To help you understand, I am a Deputy Attorney General with the California Department of Justice. I practiced civil defense litigation for 18 years, which means I defended the State and its agencies when it got sued for monetary damages, including a myriad of medical cases. For the last 3 years I have done criminal prosecution. I am also an International Swing Dance Instructor. I spent the last 12 years traveling around the world teaching swing dancing to 1000's of people. Everyone who took my classes knew it was a no-gum zone but no one knew why. My personal life had been disceted the swing world from the time I became a champion and started traveling and through divorcing my partner and continuing to teach with him. I was no stranger to gossip and nastiness.So with that in mind, I did the NY Times piece. The next day the Today show asked me to be on and I readily accepted, again knowing what was in store. When 20/20 contacted me, I jumped in with both feet, and spend almost 100 hours with the producers helping them put the show in motion. Why? Because I knew and know that the ONLY way our condition is going to get the scientific research we must have in order to figure out what our problem is and how to FIX it, not mask it, manage it or cope with it, but cure it, is to bring awareness to the general population in order to grow our numbers and with that make it alluring to researchers to want to get their hands on it. That is my mission, my driving force. I have learned to cope quite well with Misophonia, I'd say I have been highly functioning but I don't want to just cope, I want us to know what is the source and how to fix it.When Clyle posted last year about Nuerofeedback, I was intrigued. I decided to save up my money and research the heck out of NFB, given my job I know how to research medical issues and treatments. I became increasingly interested in it and decided to give it a try. As time went on I was impress with the changes, at first better sleep, relief in my left hand's essential tremor, better mood (although I'm most always pretty peppy), more motivation, and then it started, I noticed the noises less and didn't immediately respond with fight or flight to my normal triggers. I was no longer have to cope with it, manage it or mask it. That is huge. That is extraordinary. That is worth shouting from the rooftops over. I know NFB is expensive, especially if not covered by your insurance, I know not every one is willing to do it, but it is extremely promising, and everyone here should be entitled to hear all the details of it and decide for themselves whether it's right for them. I need to say that I have nothing but the utmost respect for Clyle and his doctor. My NFB doctor has spent time speaking to his doctor, as well as everybody's here who is trying it and contacted her. I am forever going to be grateful for his sharing his NFB story with us. I have been speaking to him off this board for over a year now and am very impressed with the lengths to which he attempted at trying to cope, manage and mask his Misophonia. He tried everything for he and his son and never gave up, even when life got very hard and now he and his son are living a Misophonia free life. Clyle and I don't even see eye to eye on NFB, he and his doctor believe it's OCD related, my doctor and I do not believe it is, and yet, we respect each other and see the importance of talking about NFB. Our disagreement over the source only serves to further illustrate just how much we need the research, which is vital to understanding this condition.I could easily continue on with NFB until I reach the point of no longer suffering from any Misophonia (which is where based on my progress so far I see NFB taking me) and walk away from this group in an amazing place in life. But that would not fulfill my mission. My mission is to get every type of practitioner who can help us with this problem involved, get researchers desirous of conducting studies on us to locate the source of our problem in our brain and help the appropriate medical field eradicate it. Only we can do this. Only we can come together and get the scientists and researchers involved. Think of the amazing strides we have made since before the NY Times piece came out? It's absolutely amazing and there's no reason to stop. This is why I created the google discussion group. To create a place where we can talk about ALL forms of treatments because I believe all brainstorming is good, you must throw it all in to the pot, to find the good stuff. And to create a place where we can invite practitioners and researchers to observe, ask questions, discuss whatever it takes to get them interested in us, interested in delving into our condition and eventually become desirous of research. The new google group is Not in competition with this group. Rather it will serve a purpose that, with the membership restrictions here, this group cannot. That is not a slam on this group, it's a simple fact. So please do not be upset with the new discussion group, you can participate in both, or just one, or whatever you like. But the mission is simple: free open discussion of all treatment options with researchers and practitioners admitted to observe, ask questions or discuss at http://groups.google.com/group/misophonia-support. You don't need a gmail email to join, you can join with any email address. I chose google groups because it has less kinks than yahoo and I prefer the way the discussion threads are laid out.I hope knowing who I am and why I'm here and what my mission is, will put those of you at ease who think there's a problem, when really there is none. I intend to co-exist at both groups and move forward toward a cure, yes a cure, I will not settle for less.Heidi Gorgeous, youthful skin is waiting for you. Real science. Real results.www.heidisalerno.nerium.com = Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 1, 2012 Report Share Posted August 1, 2012 Thank you for your kind words .I hope you don't mind, I'm going to repost what I have previously posted about Brain State, they are some pretty substantial differences between Brain state and typical NFB. Good luck ! :-)I've asked my NFB provider about Brain State Tech. I very much trust her and she is highly qualified and very active in the NFB world. Like she says at the end, draw your own conclusions but I would take what she says seriously. She considers my brain a highly sensitive one and would not recommend BST to me. And she would gladly recommend me to go elsewhere if she thought it would help, her priority is to get my brain wired away from Miso not to take my money, she's gone above and beyond working with me. Anyway, this is what she told me:"Brain State Technologies is first and foremost a franchised operation that does not appear to have any juried research behind it. Sessions last for hours at a time over the course of several weeks. While a robust brain could handle this and I do believe some people reporting benefit are in fact getting benefit, it would be a nightmare for a sensitive brain, and it’s unclear whether they have any method for addressing, avoiding, or correcting “overtreatment.” It is noteworthy that the developer/owner has never attended any of the professional meetings for researchers and scientists. (At least four different bodies he could choose to attend.) Also, BST was able to score an agreement with major university to be the equipment used to test whether NF worked for ADHD. There are 30 years worth of ADHD research articles substantiating the effectiveness of NF via different researchers, methods, and patients. This study [with the brain state technologies] found “no significant improvement” for ADHD, which of course the drug companies and insurance companies latched onto immediately. The university researchers had submitted their study to ISNR, who accepted them as presenters. The audience went nuts when they learned what the method and equipment was. It’s fair to say that the researchers were soundly lambasted for using a maverick product for legitimate research. Thankfully, ISNR and the university researchers have agreed to additional studies using the time-tested equipment and methods that are FDA approved and readily available nationwide. So I will let you draw your own conclusions…."Heidi I too would like to thank you for your honesty and determination. I am going back to a Brain State Clinic next week in Austin because a year and a half ago I went, this was before I knew about Misophonia, and it helped a great deal. I noticed when I mentioned Brain State it was not well received by this group for a variety of reasons,all seemed valid. I will continue for now ,based on the success I felt at my first 10 sessions. It is my understanding that NFB and Brain State are one in the same but this may not be the case and I will research this more. I taught in the Public Schools for over 20 years and worked with many students with whom I felt a strong bond, I know now why. I am going to continue to work past retirement focusing on these symptoms as I modify their work and environment.I have had some bright and talented students who failed or never reached their full potential because of this,, I was one and honestly, I don't know how I made it this far!!!!Sent from my iPad I have been posting here for quite some time and want to let you know who I am, why I am here, what my mission is and why I created the google discussion group where we can focus on all treatment options and invite practitioners and researchers into the discussion. My name is Heidi Salerno. I started out with Hyperacusis when I was very young, florescent lights caused me intense pain, drop on the floor and cry pain. Around 8 or so I developed Misophonia, unable to properly process the sounds of chewing of both food and gum. As time went out it included bass sounds from stereos,TVs in adjoining rooms, people walking above my ceiling to eventually basketballs bouncing and many other things.One day about 4 years ago my mom found and gave to me an article in a newspaper on Hyperacusis. I immediately went on online and searched the term and read the discussion board and realized that what I had was what they were complaining that other people had, 4S. I quickly found this discussion group and was amazing, as every person here has experienced, that there were others. At last, I found my people. People who could relate, understand and maybe figure out how to cope. A year ago February I agreed to be interviewed by Joyce Cohen of the New York Times. I realized how powerful this piece could be in bringing awareness as I had not been able to unearth any real mainstream coverage on 4S. While I am a private person by nature, I have been quite public the last 12 years and so I knew I what it would be like to go public with something I really shared only with my immediate family and the people I've dated/married.To help you understand, I am a Deputy Attorney General with the California Department of Justice. I practiced civil defense litigation for 18 years, which means I defended the State and its agencies when it got sued for monetary damages, including a myriad of medical cases. For the last 3 years I have done criminal prosecution. I am also an International Swing Dance Instructor. I spent the last 12 years traveling around the world teaching swing dancing to 1000's of people. Everyone who took my classes knew it was a no-gum zone but no one knew why. My personal life had been disceted the swing world from the time I became a champion and started traveling and through divorcing my partner and continuing to teach with him. I was no stranger to gossip and nastiness.So with that in mind, I did the NY Times piece. The next day the Today show asked me to be on and I readily accepted, again knowing what was in store. When 20/20 contacted me, I jumped in with both feet, and spend almost 100 hours with the producers helping them put the show in motion. Why? Because I knew and know that the ONLY way our condition is going to get the scientific research we must have in order to figure out what our problem is and how to FIX it, not mask it, manage it or cope with it, but cure it, is to bring awareness to the general population in order to grow our numbers and with that make it alluring to researchers to want to get their hands on it. That is my mission, my driving force. I have learned to cope quite well with Misophonia, I'd say I have been highly functioning but I don't want to just cope, I want us to know what is the source and how to fix it.When Clyle posted last year about Nuerofeedback, I was intrigued. I decided to save up my money and research the heck out of NFB, given my job I know how to research medical issues and treatments. I became increasingly interested in it and decided to give it a try. As time went on I was impress with the changes, at first better sleep, relief in my left hand's essential tremor, better mood (although I'm most always pretty peppy), more motivation, and then it started, I noticed the noises less and didn't immediately respond with fight or flight to my normal triggers. I was no longer have to cope with it, manage it or mask it. That is huge. That is extraordinary. That is worth shouting from the rooftops over. I know NFB is expensive, especially if not covered by your insurance, I know not every one is willing to do it, but it is extremely promising, and everyone here should be entitled to hear all the details of it and decide for themselves whether it's right for them. I need to say that I have nothing but the utmost respect for Clyle and his doctor. My NFB doctor has spent time speaking to his doctor, as well as everybody's here who is trying it and contacted her. I am forever going to be grateful for his sharing his NFB story with us. I have been speaking to him off this board for over a year now and am very impressed with the lengths to which he attempted at trying to cope, manage and mask his Misophonia. He tried everything for he and his son and never gave up, even when life got very hard and now he and his son are living a Misophonia free life. Clyle and I don't even see eye to eye on NFB, he and his doctor believe it's OCD related, my doctor and I do not believe it is, and yet, we respect each other and see the importance of talking about NFB. Our disagreement over the source only serves to further illustrate just how much we need the research, which is vital to understanding this condition.I could easily continue on with NFB until I reach the point of no longer suffering from any Misophonia (which is where based on my progress so far I see NFB taking me) and walk away from this group in an amazing place in life. But that would not fulfill my mission. My mission is to get every type of practitioner who can help us with this problem involved, get researchers desirous of conducting studies on us to locate the source of our problem in our brain and help the appropriate medical field eradicate it. Only we can do this. Only we can come together and get the scientists and researchers involved. Think of the amazing strides we have made since before the NY Times piece came out? It's absolutely amazing and there's no reason to stop. This is why I created the google discussion group. To create a place where we can talk about ALL forms of treatments because I believe all brainstorming is good, you must throw it all in to the pot, to find the good stuff. And to create a place where we can invite practitioners and researchers to observe, ask questions, discuss whatever it takes to get them interested in us, interested in delving into our condition and eventually become desirous of research. The new google group is Not in competition with this group. Rather it will serve a purpose that, with the membership restrictions here, this group cannot. That is not a slam on this group, it's a simple fact. So please do not be upset with the new discussion group, you can participate in both, or just one, or whatever you like. But the mission is simple: free open discussion of all treatment options with researchers and practitioners admitted to observe, ask questions or discuss at http://groups.google.com/group/misophonia-support. You don't need a gmail email to join, you can join with any email address. I chose google groups because it has less kinks than yahoo and I prefer the way the discussion threads are laid out.I hope knowing who I am and why I'm here and what my mission is, will put those of you at ease who think there's a problem, when really there is none. I intend to co-exist at both groups and move forward toward a cure, yes a cure, I will not settle for less.Heidi Gorgeous, youthful skin is waiting for you. Real science. Real results.www.heidisalerno.nerium.com = Gorgeous, youthful skin is waiting for you. Real science. Real results.www.heidisalerno.nerium.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 2, 2012 Report Share Posted August 2, 2012 I did 20 sessions of Brain State Tech. last spring. It did help a lot with my insomnia and anxiety. I will never know if it would help with the Miso, since I am starting a more traditional NFB instead, because they did not know for sure if it would help me with the Miso and had never treated anyone with that condition. I have to say in their defense that they were very professional, caring and never after my money. Also the sessions never last more than 1 1/2 hours, and were very relaxing. I always felt calm and well rested afterwards. In fact, I slept through 80% of the sessions and it was some of the deepest sleep that I can remember. The cost was about $100.00 per hour. That said, I am going to stick with a more traditional NFB, since that has proven, at least in a few cases so far, to have been very effective in treating Miso.Until someone comes along with some very convincing evidence that they have been "cured" of Misophonia by some other means, I will go for now with NFB.I can understand the caution needed here not to run out spend large sums of money or go into debt for something that has only worked for a limited number of Miso patients. Only time will tell if it proves to be the answer we are looking for. We can only hope at this point. Luckily a few of us are willing and able to give it a try. That is my opinion for what it is worth.May we find a cure soon that works for everyone!Mike To: Soundsensitivity Sent: Wednesday, August 1, 2012 10:14 PM Subject: Re: Who I am Thank you for your kind words .I hope you don't mind, I'm going to repost what I have previously posted about Brain State, they are some pretty substantial differences between Brain state and typical NFB. Good luck ! :-)I've asked my NFB provider about Brain State Tech. I very much trust her and she is highly qualified and very active in the NFB world. Like she says at the end, draw your own conclusions but I would take what she says seriously. She considers my brain a highly sensitive one and would not recommend BST to me. And she would gladly recommend me to go elsewhere if she thought it would help, her priority is to get my brain wired away from Miso not to take my money, she's gone above and beyond working with me. Anyway, this is what she told me:"Brain State Technologies is first and foremost a franchised operation that does not appear to have any juried research behind it. Sessions last for hours at a time over the course of several weeks. While a robust brain could handle this and I do believe some people reporting benefit are in fact getting benefit, it would be a nightmare for a sensitive brain, and it’s unclear whether they have any method for addressing, avoiding, or correcting “overtreatment.†It is noteworthy that the developer/owner has never attended any of the professional meetings for researchers and scientists. (At least four different bodies he could choose to attend.) Also, BST was able to score an agreement with major university to be the equipment used to test whether NF worked for ADHD. There are 30 years worth of ADHD research articles substantiating the effectiveness of NF via different researchers, methods, and patients. This study [with the brain state technologies] found “no significant improvement†for ADHD, which of course the drug companies and insurance companies latched onto immediately. The university researchers had submitted their study to ISNR, who accepted them as presenters. The audience went nuts when they learned what the method and equipment was. It’s fair to say that the researchers were soundly lambasted for using a maverick product for legitimate research. Thankfully, ISNR and the university researchers have agreed to additional studies using the time-tested equipment and methods that are FDA approved and readily available nationwide. So I will let you draw your own conclusions…."Heidi I too would like to thank you for your honesty and determination. I am going back to a Brain State Clinic next week in Austin because a year and a half ago I went, this was before I knew about Misophonia, and it helped a great deal. I noticed when I mentioned Brain State it was not well received by this group for a variety of reasons,all seemed valid. I will continue for now ,based on the success I felt at my first 10 sessions. It is my understanding that NFB and Brain State are one in the same but this may not be the case and I will research this more. I taught in the Public Schools for over 20 years and worked with many students with whom I felt a strong bond, I know now why. I am going to continue to work past retirement focusing on these symptoms as I modify their work and environment.I have had some bright and talented students who failed or never reached their full potential because of this,, I was one and honestly, I don't know how I made it this far!!!!Sent from my iPad I have been posting here for quite some time and want to let you know who I am, why I am here, what my mission is and why I created the google discussion group where we can focus on all treatment options and invite practitioners and researchers into the discussion. My name is Heidi Salerno. I started out with Hyperacusis when I was very young, florescent lights caused me intense pain, drop on the floor and cry pain. Around 8 or so I developed Misophonia, unable to properly process the sounds of chewing of both food and gum. As time went out it included bass sounds from stereos,TVs in adjoining rooms, people walking above my ceiling to eventually basketballs bouncing and many other things.One day about 4 years ago my mom found and gave to me an article in a newspaper on Hyperacusis. I immediately went on online and searched the term and read the discussion board and realized that what I had was what they were complaining that other people had, 4S. I quickly found this discussion group and was amazing, as every person here has experienced, that there were others. At last, I found my people. People who could relate, understand and maybe figure out how to cope. A year ago February I agreed to be interviewed by Joyce Cohen of the New York Times. I realized how powerful this piece could be in bringing awareness as I had not been able to unearth any real mainstream coverage on 4S. While I am a private person by nature, I have been quite public the last 12 years and so I knew I what it would be like to go public with something I really shared only with my immediate family and the people I've dated/married.To help you understand, I am a Deputy Attorney General with the California Department of Justice. I practiced civil defense litigation for 18 years, which means I defended the State and its agencies when it got sued for monetary damages, including a myriad of medical cases. For the last 3 years I have done criminal prosecution. I am also an International Swing Dance Instructor. I spent the last 12 years traveling around the world teaching swing dancing to 1000's of people. Everyone who took my classes knew it was a no-gum zone but no one knew why. My personal life had been disceted the swing world from the time I became a champion and started traveling and through divorcing my partner and continuing to teach with him. I was no stranger to gossip and nastiness.So with that in mind, I did the NY Times piece. The next day the Today show asked me to be on and I readily accepted, again knowing what was in store. When 20/20 contacted me, I jumped in with both feet, and spend almost 100 hours with the producers helping them put the show in motion. Why? Because I knew and know that the ONLY way our condition is going to get the scientific research we must have in order to figure out what our problem is and how to FIX it, not mask it, manage it or cope with it, but cure it, is to bring awareness to the general population in order to grow our numbers and with that make it alluring to researchers to want to get their hands on it. That is my mission, my driving force. I have learned to cope quite well with Misophonia, I'd say I have been highly functioning but I don't want to just cope, I want us to know what is the source and how to fix it.When Clyle posted last year about Nuerofeedback, I was intrigued. I decided to save up my money and research the heck out of NFB, given my job I know how to research medical issues and treatments. I became increasingly interested in it and decided to give it a try. As time went on I was impress with the changes, at first better sleep, relief in my left hand's essential tremor, better mood (although I'm most always pretty peppy), more motivation, and then it started, I noticed the noises less and didn't immediately respond with fight or flight to my normal triggers. I was no longer have to cope with it, manage it or mask it. That is huge. That is extraordinary. That is worth shouting from the rooftops over. I know NFB is expensive, especially if not covered by your insurance, I know not every one is willing to do it, but it is extremely promising, and everyone here should be entitled to hear all the details of it and decide for themselves whether it's right for them. I need to say that I have nothing but the utmost respect for Clyle and his doctor. My NFB doctor has spent time speaking to his doctor, as well as everybody's here who is trying it and contacted her. I am forever going to be grateful for his sharing his NFB story with us. I have been speaking to him off this board for over a year now and am very impressed with the lengths to which he attempted at trying to cope, manage and mask his Misophonia. He tried everything for he and his son and never gave up, even when life got very hard and now he and his son are living a Misophonia free life. Clyle and I don't even see eye to eye on NFB, he and his doctor believe it's OCD related, my doctor and I do not believe it is, and yet, we respect each other and see the importance of talking about NFB. Our disagreement over the source only serves to further illustrate just how much we need the research, which is vital to understanding this condition.I could easily continue on with NFB until I reach the point of no longer suffering from any Misophonia (which is where based on my progress so far I see NFB taking me) and walk away from this group in an amazing place in life. But that would not fulfill my mission. My mission is to get every type of practitioner who can help us with this problem involved, get researchers desirous of conducting studies on us to locate the source of our problem in our brain and help the appropriate medical field eradicate it. Only we can do this. Only we can come together and get the scientists and researchers involved. Think of the amazing strides we have made since before the NY Times piece came out? It's absolutely amazing and there's no reason to stop. This is why I created the google discussion group. To create a place where we can talk about ALL forms of treatments because I believe all brainstorming is good, you must throw it all in to the pot, to find the good stuff. And to create a place where we can invite practitioners and researchers to observe, ask questions, discuss whatever it takes to get them interested in us, interested in delving into our condition and eventually become desirous of research. The new google group is Not in competition with this group. Rather it will serve a purpose that, with the membership restrictions here, this group cannot. That is not a slam on this group, it's a simple fact. So please do not be upset with the new discussion group, you can participate in both, or just one, or whatever you like. But the mission is simple: free open discussion of all treatment options with researchers and practitioners admitted to observe, ask questions or discuss at http://groups.google.com/group/misophonia-support. You don't need a gmail email to join, you can join with any email address. I chose google groups because it has less kinks than yahoo and I prefer the way the discussion threads are laid out.I hope knowing who I am and why I'm here and what my mission is, will put those of you at ease who think there's a problem, when really there is none. I intend to co-exist at both groups and move forward toward a cure, yes a cure, I will not settle for less.Heidi Gorgeous, youthful skin is waiting for you. Real science. Real results.www.heidisalerno.nerium.com = Gorgeous, youthful skin is waiting for you. Real science. Real results.www.heidisalerno.nerium.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 2, 2012 Report Share Posted August 2, 2012 Heidi, Thanks so much! I will research my approach to this. I think part of my choice is because I live in such a difficult and rural part of the country. It can be exhausting traveling to the places that would have what I need. I can, when this condition hits me hard and wears me out ,develop agoraphobia. That takes some serious concentration just to literally move from one spot to another. It is easy, well easier to do the Brain State. I do feel relaxed and able to cope with stress better, but in all honesty did not see improvements with the Misophonia. The insidious adjustments I have made over the years have just now opened my eyes to the importance of using a combination of treatments. Many have been mentioned in this group. Sent from my iPad Thank you for your kind words .I hope you don't mind, I'm going to repost what I have previously posted about Brain State, they are some pretty substantial differences between Brain state and typical NFB. Good luck ! :-)I've asked my NFB provider about Brain State Tech. I very much trust her and she is highly qualified and very active in the NFB world. Like she says at the end, draw your own conclusions but I would take what she says seriously. She considers my brain a highly sensitive one and would not recommend BST to me. And she would gladly recommend me to go elsewhere if she thought it would help, her priority is to get my brain wired away from Miso not to take my money, she's gone above and beyond working with me. Anyway, this is what she told me:"Brain State Technologies is first and foremost a franchised operation that does not appear to have any juried research behind it. Sessions last for hours at a time over the course of several weeks. While a robust brain could handle this and I do believe some people reporting benefit are in fact getting benefit, it would be a nightmare for a sensitive brain, and it’s unclear whether they have any method for addressing, avoiding, or correcting “overtreatment.†It is noteworthy that the developer/owner has never attended any of the professional meetings for researchers and scientists. (At least four different bodies he could choose to attend.) Also, BST was able to score an agreement with major university to be the equipment used to test whether NF worked for ADHD. There are 30 years worth of ADHD research articles substantiating the effectiveness of NF via different researchers, methods, and patients. This study [with the brain state technologies] found “no significant improvement†for ADHD, which of course the drug companies and insurance companies latched onto immediately. The university researchers had submitted their study to ISNR, who accepted them as presenters. The audience went nuts when they learned what the method and equipment was. It’s fair to say that the researchers were soundly lambasted for using a maverick product for legitimate research. Thankfully, ISNR and the university researchers have agreed to additional studies using the time-tested equipment and methods that are FDA approved and readily available nationwide. So I will let you draw your own conclusions…."Heidi I too would like to thank you for your honesty and determination. I am going back to a Brain State Clinic next week in Austin because a year and a half ago I went, this was before I knew about Misophonia, and it helped a great deal. I noticed when I mentioned Brain State it was not well received by this group for a variety of reasons,all seemed valid. I will continue for now ,based on the success I felt at my first 10 sessions. It is my understanding that NFB and Brain State are one in the same but this may not be the case and I will research this more. I taught in the Public Schools for over 20 years and worked with many students with whom I felt a strong bond, I know now why. I am going to continue to work past retirement focusing on these symptoms as I modify their work and environment.I have had some bright and talented students who failed or never reached their full potential because of this,, I was one and honestly, I don't know how I made it this far!!!!Sent from my iPad I have been posting here for quite some time and want to let you know who I am, why I am here, what my mission is and why I created the google discussion group where we can focus on all treatment options and invite practitioners and researchers into the discussion. My name is Heidi Salerno. I started out with Hyperacusis when I was very young, florescent lights caused me intense pain, drop on the floor and cry pain. Around 8 or so I developed Misophonia, unable to properly process the sounds of chewing of both food and gum. As time went out it included bass sounds from stereos,TVs in adjoining rooms, people walking above my ceiling to eventually basketballs bouncing and many other things.One day about 4 years ago my mom found and gave to me an article in a newspaper on Hyperacusis. I immediately went on online and searched the term and read the discussion board and realized that what I had was what they were complaining that other people had, 4S. I quickly found this discussion group and was amazing, as every person here has experienced, that there were others. At last, I found my people. People who could relate, understand and maybe figure out how to cope. A year ago February I agreed to be interviewed by Joyce Cohen of the New York Times. I realized how powerful this piece could be in bringing awareness as I had not been able to unearth any real mainstream coverage on 4S. While I am a private person by nature, I have been quite public the last 12 years and so I knew I what it would be like to go public with something I really shared only with my immediate family and the people I've dated/married.To help you understand, I am a Deputy Attorney General with the California Department of Justice. I practiced civil defense litigation for 18 years, which means I defended the State and its agencies when it got sued for monetary damages, including a myriad of medical cases. For the last 3 years I have done criminal prosecution. I am also an International Swing Dance Instructor. I spent the last 12 years traveling around the world teaching swing dancing to 1000's of people. Everyone who took my classes knew it was a no-gum zone but no one knew why. My personal life had been disceted the swing world from the time I became a champion and started traveling and through divorcing my partner and continuing to teach with him. I was no stranger to gossip and nastiness.So with that in mind, I did the NY Times piece. The next day the Today show asked me to be on and I readily accepted, again knowing what was in store. When 20/20 contacted me, I jumped in with both feet, and spend almost 100 hours with the producers helping them put the show in motion. Why? Because I knew and know that the ONLY way our condition is going to get the scientific research we must have in order to figure out what our problem is and how to FIX it, not mask it, manage it or cope with it, but cure it, is to bring awareness to the general population in order to grow our numbers and with that make it alluring to researchers to want to get their hands on it. That is my mission, my driving force. I have learned to cope quite well with Misophonia, I'd say I have been highly functioning but I don't want to just cope, I want us to know what is the source and how to fix it.When Clyle posted last year about Nuerofeedback, I was intrigued. I decided to save up my money and research the heck out of NFB, given my job I know how to research medical issues and treatments. I became increasingly interested in it and decided to give it a try. As time went on I was impress with the changes, at first better sleep, relief in my left hand's essential tremor, better mood (although I'm most always pretty peppy), more motivation, and then it started, I noticed the noises less and didn't immediately respond with fight or flight to my normal triggers. I was no longer have to cope with it, manage it or mask it. That is huge. That is extraordinary. That is worth shouting from the rooftops over. I know NFB is expensive, especially if not covered by your insurance, I know not every one is willing to do it, but it is extremely promising, and everyone here should be entitled to hear all the details of it and decide for themselves whether it's right for them. I need to say that I have nothing but the utmost respect for Clyle and his doctor. My NFB doctor has spent time speaking to his doctor, as well as everybody's here who is trying it and contacted her. I am forever going to be grateful for his sharing his NFB story with us. I have been speaking to him off this board for over a year now and am very impressed with the lengths to which he attempted at trying to cope, manage and mask his Misophonia. He tried everything for he and his son and never gave up, even when life got very hard and now he and his son are living a Misophonia free life. Clyle and I don't even see eye to eye on NFB, he and his doctor believe it's OCD related, my doctor and I do not believe it is, and yet, we respect each other and see the importance of talking about NFB. Our disagreement over the source only serves to further illustrate just how much we need the research, which is vital to understanding this condition.I could easily continue on with NFB until I reach the point of no longer suffering from any Misophonia (which is where based on my progress so far I see NFB taking me) and walk away from this group in an amazing place in life. But that would not fulfill my mission. My mission is to get every type of practitioner who can help us with this problem involved, get researchers desirous of conducting studies on us to locate the source of our problem in our brain and help the appropriate medical field eradicate it. Only we can do this. Only we can come together and get the scientists and researchers involved. Think of the amazing strides we have made since before the NY Times piece came out? It's absolutely amazing and there's no reason to stop. This is why I created the google discussion group. To create a place where we can talk about ALL forms of treatments because I believe all brainstorming is good, you must throw it all in to the pot, to find the good stuff. And to create a place where we can invite practitioners and researchers to observe, ask questions, discuss whatever it takes to get them interested in us, interested in delving into our condition and eventually become desirous of research. The new google group is Not in competition with this group. Rather it will serve a purpose that, with the membership restrictions here, this group cannot. That is not a slam on this group, it's a simple fact. So please do not be upset with the new discussion group, you can participate in both, or just one, or whatever you like. But the mission is simple: free open discussion of all treatment options with researchers and practitioners admitted to observe, ask questions or discuss at http://groups.google.com/group/misophonia-support. You don't need a gmail email to join, you can join with any email address. I chose google groups because it has less kinks than yahoo and I prefer the way the discussion threads are laid out.I hope knowing who I am and why I'm here and what my mission is, will put those of you at ease who think there's a problem, when really there is none. I intend to co-exist at both groups and move forward toward a cure, yes a cure, I will not settle for less.Heidi Gorgeous, youthful skin is waiting for you. Real science. Real results.www.heidisalerno.nerium.com = Gorgeous, youthful skin is waiting for you. Real science. Real results.www.heidisalerno.nerium.com = Quote Link to comment Share on other sites More sharing options...
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