Guest guest Posted July 1, 2008 Report Share Posted July 1, 2008 How about sending it to Dr. Phil????Kathy Howe wrote: Thanks so much . You wrote everything I try to put into words. I will definitely use this. I will send it to a research department of the NIH. Thanks, Kathy Howe -----Original Message-----From: Soundsensitivity [mailto:Soundsensitivity ]On Behalf Of Sent: Monday, April 07, 2008 11:18 AMTo: Soundsensitivity Subject: letter sent I have just sent the following letter to both the Oprah Winfrey and the Ellen DeGeneres show. I also sent a variation of this same letter to most of the doctors listed on the House Ear Institute site (thanks for posting that one). I hope someone here will be willing to appear, should they be interested. I will even consider it myself. I'm sick of this rollercoaster ride, and I want off! Here it is, in case anyone else wants to copy it and use to send to other shows, institutes, etc. Again, it will need tweaking again, if sent to physicians/colleges. ----------------Hello there! I am hoping you will have interest in a disorder that I have and which is intimately related to hearing. It is called 4S (Selective Sound Sensitivity Syndrome). I thought I was alone in this nightmarish disorder/disease, but then found a newsgroup on Yahoo (Soundsensitivity) which was started by Marsha , an audiologist in Oregon. This group was started two years ago, and has already grown to 800 members and continuing to grow rapidly. I am writing to you in hopes that you will do a show on this disorder or at least welcome a guest/victim to speak about it. In turn, we hope that appearance by one or more of us will shed some light on this disorder and interest some professionals in doing some research on 4S. After conversing with other 4S sufferers, it is clear that this permeates society in far greater numbers than we had thought. We are not alone. And this disorder, or whatever is, is destroying our lives. 4S seems to have an early onset, around adolescence, strike both men and women, and be genetic. And I cannot stress enough: We are not mentally ill. Most of us have sought out head doctors and just do not fit the classic symptoms of any one mental illness. So what is this thing? We have no idea!! But we do exist and we do suffer daily!! Those of us who participate on the 4S site are either the parents of children who have it, or have it ourselves. Most of us have suffered from this for over 20 years, with noise intolerance growing as we age (not getting better). Here is a brief description of our symptoms:Acute sensitivity to a plethora of sounds, some soft and some loud, usually high treble, but not always. This sensitivity triggers an immediate response of fear, anguish and rage. The sounds that most commonly trigger this response are: nearly all mouth sounds, esp. chewing food or gum, burping, breathing, coughing, throat clearing, scraping dishes, plastic bags rattling, bouncing balls, loud or pounding type music, talking, beeping from machines, clicking (keyboards, pens, etc.), speaking certain vowels, like S's, L's and P's, tearing paper, rattling newspaper, etc. And trust me on this, a guest on your show will be entertaining. All we have left is our senses of humor to help us cope with this!! We laugh, because we crying no longer helps.Not all sounds bother us. Not even most loud sounds. Most of us are unbothered by and even love most music, the sound of birds, water running, engines running, a thunderstorm, children laughing, a train crossing, etc.As for the triggers sounds that do hurt us (and hurt is the only way I can describe it)... when I say we rage, I mean RAGE. We then hang by a thread to our semblance of civility in not saying anything. Some of us are pushed to the brink and have spoken out about the trigger sound (if made by another person). We who suffer from 4S are normal, healthy people. We are totally calm, doing our work or whatever, and then suddenly we hear a trigger sound and our bodies go through a physiological change that we cannot control. Our breathing and heartbeat becomes rapid. Our chests tighten. We have fight or flight reactions. But we can only escape through earphones or drugs or running away or asking the other person to refrain. All of the above are not solutions, nor do they necessarily work. I have yet to find earphones that will block out the trigger sound, no matter how soft it might be. 4S has a direct impact on how we function as human beings. The quality of our relationships, as well as our ability to work, are threatened by both the disorder itself, but also by our only means of coping with it (as mentioned just previously). When we speak up about this acute sensitivity, there are blatant negative reprisals, as if we are making it up or trying to be rude. We do not choose the sounds that hurt us; they choose us. And we have no way of escaping this nightmare. We have all tried various medical/psychological approaches, but most physicians we have no knowledge of this disorder and therefore shoot in the dark, misdiagnosing us with the closest thing they can - as either OCD (though we don't fit the classic symptoms in any other way) or a hearing disorder that has no visible cause. Many of us feel that this is genetic as more than one in our families share the same symptoms. And, by the way, In seeking medical treatment, most of us have been provided with pink noise CDs which don't help or with anti-depressent or sedative meds. Of course, these meds have side effects which make us zombies or physically debilitated.Other than 4S, and its intolerable nature, we are normal, functioning human beings, usually highly intelligent, loving and social. We at the Soundsensitivity newsgroup are trying to get the word out to the world and esp. to the medical community in the hope that someone will take it seriously and attempt to find a cure or at least a treatment that works. Ryman208 Waverly PlaceWaukesha, WI Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 2, 2008 Report Share Posted July 2, 2008 Hello all... I'm new here and when I read that letter, it totally described myself. I really hope Oprah, or someone else, does a show on this condition because I really think there are more people who suffer from this than people realize. I've been like this since I was about 12, but it's gotten worse over the last few years (I am now 35). I've been to the doctor and they always blame anxiety (which I do have) but I know it's not anxiety. The sounds, and how I react to them, make my anxiety worse. I take meds for the anxiety and it does nothing to help with the intolerance of the sounds that drive me mad. I never knew there was actually a name for this and others who have suffered as I have. I wish no one else had to go through this but at the same time, it's nice to know that I'm not alone in this and I'm not crazy like I'd thought!! It's nice to have a place to go, where others can relate to what I am going through. Darlene Thanks so much . You wrote everything I try to put into words. I will definitely use this. I will send it to a research department of the NIH. > > Thanks, > > Kathy Howe > letter sent > > > I have just sent the following letter to both the Oprah Winfrey and > the Ellen DeGeneres show. I also sent a variation of this same > letter to most of the doctors listed on the House Ear Institute site > (thanks for posting that one). I hope someone here will be willing > to appear, should they be interested. I will even consider it > myself. I'm sick of this rollercoaster ride, and I want off! > > Here it is, in case anyone else wants to copy it and use to send to > other shows, institutes, etc. Again, it will need tweaking again, if > sent to physicians/colleges. > > > > ---------------- > > Hello there! > > I am hoping you will have interest in a disorder that I have and > which is intimately related to hearing. It is called 4S (Selective > Sound Sensitivity Syndrome). I thought I was alone in this > nightmarish disorder/disease, but then found a newsgroup on Yahoo > (Soundsensitivity) which was started by Marsha , an > audiologist in Oregon. This group was started two years ago, and has > already grown to 800 members and continuing to grow rapidly. > > I am writing to you in hopes that you will do a show on this disorder > or at least welcome a guest/victim to speak about it. In turn, we > hope that appearance by one or more of us will shed some light on > this disorder and interest some professionals in doing some research > on 4S. After conversing with other 4S sufferers, it is clear that > this permeates society in far greater numbers than we had thought. > We are not alone. And this disorder, or whatever is, is destroying > our lives. > > 4S seems to have an early onset, around adolescence, strike both men > and women, and be genetic. And I cannot stress enough: We are not > mentally ill. Most of us have sought out head doctors and just do > not fit the classic symptoms of any one mental illness. So what is > this thing? We have no idea!! But we do exist and we do suffer > daily!! Those of us who participate on the 4S site are either the > parents of children who have it, or have it ourselves. Most of us > have suffered from this for over 20 years, with noise intolerance > growing as we age (not getting better). Here is a brief description > of our symptoms: > > Acute sensitivity to a plethora of sounds, some soft and some loud, > usually high treble, but not always. This sensitivity triggers an > immediate response of fear, anguish and rage. The sounds that most > commonly trigger this response are: nearly all mouth sounds, esp. > chewing food or gum, burping, breathing, coughing, throat clearing, > scraping dishes, plastic bags rattling, bouncing balls, loud or > pounding type music, talking, beeping from machines, clicking > (keyboards, pens, etc.), speaking certain vowels, like S's, L's and > P's, tearing paper, rattling newspaper, etc. And trust me on this, a > guest on your show will be entertaining. All we have left is our > senses of humor to help us cope with this!! We laugh, because we > crying no longer helps. > > Not all sounds bother us. Not even most loud sounds. Most of us are > unbothered by and even love most music, the sound of birds, water > running, engines running, a thunderstorm, children laughing, a train > crossing, etc. > > As for the triggers sounds that do hurt us (and hurt is the only way > I can describe it)... when I say we rage, I mean RAGE. We then hang > by a thread to our semblance of civility in not saying anything. Some > of us are pushed to the brink and have spoken out about the trigger > sound (if made by another person). > > We who suffer from 4S are normal, healthy people. We are totally > calm, doing our work or whatever, and then suddenly we hear a trigger > sound and our bodies go through a physiological change that we cannot > control. Our breathing and heartbeat becomes rapid. Our chests > tighten. We have fight or flight reactions. But we can only escape > through earphones or drugs or running away or asking the other person > to refrain. All of the above are not solutions, nor do they > necessarily work. I have yet to find earphones that will block out > the trigger sound, no matter how soft it might be. > > 4S has a direct impact on how we function as human beings. The > quality of our relationships, as well as our ability to work, are > threatened by both the disorder itself, but also by our only means of > coping with it (as mentioned just previously). When we speak up about > this acute sensitivity, there are blatant negative reprisals, as if > we are making it up or trying to be rude. We do not choose the > sounds that hurt us; they choose us. And we have no way of escaping > this nightmare. > > We have all tried various medical/psychological approaches, but most > physicians we have no knowledge of this disorder and therefore shoot > in the dark, misdiagnosing us with the closest thing they can - as > either OCD (though we don't fit the classic symptoms in any other > way) or a hearing disorder that has no visible cause. Many of us > feel that this is genetic as more than one in our families share the > same symptoms. And, by the way, In seeking medical treatment, most > of us have been provided with pink noise CDs which don't help or with > anti-depressent or sedative meds. Of course, these meds have side > effects which make us zombies or physically debilitated. > > Other than 4S, and its intolerable nature, we are normal, functioning > human beings, usually highly intelligent, loving and social. > > We at the Soundsensitivity newsgroup are trying to get the word out > to the world and esp. to the medical community in the hope that > someone will take it seriously and attempt to find a cure or at least > a treatment that works. > > Ryman > 208 Waverly Place > Waukesha, WI > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 2, 2008 Report Share Posted July 2, 2008 I went on Dr. Phil for this and I would love to go back having had them do their homework and on a show that is specifically about 4S and not " Etiquette Dilemmas " as it was when I went. You can see my Dr. Phil appearance here: http://xanga.com/hbasemomof6 How about sending it to Dr. Phil????Kathy Howe wrote: Thanks so much . You wrote everything I try to put into words. I will definitely use this. I will send it to a research department of the NIH. Thanks, Kathy Howe -----Original Message----- From: Soundsensitivity [mailto:Soundsensitivity ]On Behalf Of Sent: Monday, April 07, 2008 11:18 AMTo: Soundsensitivity Subject: letter sent I have just sent the following letter to both the Oprah Winfrey and the Ellen DeGeneres show. I also sent a variation of this same letter to most of the doctors listed on the House Ear Institute site (thanks for posting that one). I hope someone here will be willing to appear, should they be interested. I will even consider it myself. I'm sick of this rollercoaster ride, and I want off! Here it is, in case anyone else wants to copy it and use to send to other shows, institutes, etc. Again, it will need tweaking again, if sent to physicians/colleges. ----------------Hello there! I am hoping you will have interest in a disorder that I have and which is intimately related to hearing. It is called 4S (Selective Sound Sensitivity Syndrome). I thought I was alone in this nightmarish disorder/disease, but then found a newsgroup on Yahoo (Soundsensitivity) which was started by Marsha , an audiologist in Oregon. This group was started two years ago, and has already grown to 800 members and continuing to grow rapidly. I am writing to you in hopes that you will do a show on this disorder or at least welcome a guest/victim to speak about it. In turn, we hope that appearance by one or more of us will shed some light on this disorder and interest some professionals in doing some research on 4S. After conversing with other 4S sufferers, it is clear that this permeates society in far greater numbers than we had thought. We are not alone. And this disorder, or whatever is, is destroying our lives. 4S seems to have an early onset, around adolescence, strike both men and women, and be genetic. And I cannot stress enough: We are not mentally ill. Most of us have sought out head doctors and just do not fit the classic symptoms of any one mental illness. So what is this thing? We have no idea!! But we do exist and we do suffer daily!! Those of us who participate on the 4S site are either the parents of children who have it, or have it ourselves. Most of us have suffered from this for over 20 years, with noise intolerance growing as we age (not getting better). Here is a brief description of our symptoms:Acute sensitivity to a plethora of sounds, some soft and some loud, usually high treble, but not always. This sensitivity triggers an immediate response of fear, anguish and rage. The sounds that most commonly trigger this response are: nearly all mouth sounds, esp. chewing food or gum, burping, breathing, coughing, throat clearing, scraping dishes, plastic bags rattling, bouncing balls, loud or pounding type music, talking, beeping from machines, clicking (keyboards, pens, etc.), speaking certain vowels, like S's, L's and P's, tearing paper, rattling newspaper, etc. And trust me on this, a guest on your show will be entertaining. All we have left is our senses of humor to help us cope with this!! We laugh, because we crying no longer helps.Not all sounds bother us. Not even most loud sounds. Most of us are unbothered by and even love most music, the sound of birds, water running, engines running, a thunderstorm, children laughing, a train crossing, etc.As for the triggers sounds that do hurt us (and hurt is the only way I can describe it)... when I say we rage, I mean RAGE. We then hang by a thread to our semblance of civility in not saying anything. Some of us are pushed to the brink and have spoken out about the trigger sound (if made by another person). We who suffer from 4S are normal, healthy people. We are totally calm, doing our work or whatever, and then suddenly we hear a trigger sound and our bodies go through a physiological change that we cannot control. Our breathing and heartbeat becomes rapid. Our chests tighten. We have fight or flight reactions. But we can only escape through earphones or drugs or running away or asking the other person to refrain. All of the above are not solutions, nor do they necessarily work. I have yet to find earphones that will block out the trigger sound, no matter how soft it might be. 4S has a direct impact on how we function as human beings. The quality of our relationships, as well as our ability to work, are threatened by both the disorder itself, but also by our only means of coping with it (as mentioned just previously). When we speak up about this acute sensitivity, there are blatant negative reprisals, as if we are making it up or trying to be rude. We do not choose the sounds that hurt us; they choose us. And we have no way of escaping this nightmare. We have all tried various medical/psychological approaches, but most physicians we have no knowledge of this disorder and therefore shoot in the dark, misdiagnosing us with the closest thing they can - as either OCD (though we don't fit the classic symptoms in any other way) or a hearing disorder that has no visible cause. Many of us feel that this is genetic as more than one in our families share the same symptoms. And, by the way, In seeking medical treatment, most of us have been provided with pink noise CDs which don't help or with anti-depressent or sedative meds. Of course, these meds have side effects which make us zombies or physically debilitated.Other than 4S, and its intolerable nature, we are normal, functioning human beings, usually highly intelligent, loving and social. We at the Soundsensitivity newsgroup are trying to get the word out to the world and esp. to the medical community in the hope that someone will take it seriously and attempt to find a cure or at least a treatment that works. Ryman208 Waverly PlaceWaukesha, WI -- Joan V.My Blog: http://www.xanga.com/hbasedmomof6Legitimate Jobs From Homehttp://wahparents.blogspot.com/ Read about My Parenting Paradigm Shifthttp://www.freewebs.com/suffer-the-little-children/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 2, 2008 Report Share Posted July 2, 2008 BTW.. awesome letter! I went on Dr. Phil for this and I would love to go back having had them do their homework and on a show that is specifically about 4S and not " Etiquette Dilemmas " as it was when I went. You can see my Dr. Phil appearance here: http://xanga.com/hbasemomof6 How about sending it to Dr. Phil????Kathy Howe wrote: Thanks so much . You wrote everything I try to put into words. I will definitely use this. I will send it to a research department of the NIH. Thanks, Kathy Howe -----Original Message----- From: Soundsensitivity [mailto:Soundsensitivity ]On Behalf Of Sent: Monday, April 07, 2008 11:18 AMTo: Soundsensitivity Subject: letter sent I have just sent the following letter to both the Oprah Winfrey and the Ellen DeGeneres show. I also sent a variation of this same letter to most of the doctors listed on the House Ear Institute site (thanks for posting that one). I hope someone here will be willing to appear, should they be interested. I will even consider it myself. I'm sick of this rollercoaster ride, and I want off! Here it is, in case anyone else wants to copy it and use to send to other shows, institutes, etc. Again, it will need tweaking again, if sent to physicians/colleges. ----------------Hello there! I am hoping you will have interest in a disorder that I have and which is intimately related to hearing. It is called 4S (Selective Sound Sensitivity Syndrome). I thought I was alone in this nightmarish disorder/disease, but then found a newsgroup on Yahoo (Soundsensitivity) which was started by Marsha , an audiologist in Oregon. This group was started two years ago, and has already grown to 800 members and continuing to grow rapidly. I am writing to you in hopes that you will do a show on this disorder or at least welcome a guest/victim to speak about it. In turn, we hope that appearance by one or more of us will shed some light on this disorder and interest some professionals in doing some research on 4S. After conversing with other 4S sufferers, it is clear that this permeates society in far greater numbers than we had thought. We are not alone. And this disorder, or whatever is, is destroying our lives. 4S seems to have an early onset, around adolescence, strike both men and women, and be genetic. And I cannot stress enough: We are not mentally ill. Most of us have sought out head doctors and just do not fit the classic symptoms of any one mental illness. So what is this thing? We have no idea!! But we do exist and we do suffer daily!! Those of us who participate on the 4S site are either the parents of children who have it, or have it ourselves. Most of us have suffered from this for over 20 years, with noise intolerance growing as we age (not getting better). Here is a brief description of our symptoms:Acute sensitivity to a plethora of sounds, some soft and some loud, usually high treble, but not always. This sensitivity triggers an immediate response of fear, anguish and rage. The sounds that most commonly trigger this response are: nearly all mouth sounds, esp. chewing food or gum, burping, breathing, coughing, throat clearing, scraping dishes, plastic bags rattling, bouncing balls, loud or pounding type music, talking, beeping from machines, clicking (keyboards, pens, etc.), speaking certain vowels, like S's, L's and P's, tearing paper, rattling newspaper, etc. And trust me on this, a guest on your show will be entertaining. All we have left is our senses of humor to help us cope with this!! We laugh, because we crying no longer helps.Not all sounds bother us. Not even most loud sounds. Most of us are unbothered by and even love most music, the sound of birds, water running, engines running, a thunderstorm, children laughing, a train crossing, etc.As for the triggers sounds that do hurt us (and hurt is the only way I can describe it)... when I say we rage, I mean RAGE. We then hang by a thread to our semblance of civility in not saying anything. Some of us are pushed to the brink and have spoken out about the trigger sound (if made by another person). We who suffer from 4S are normal, healthy people. We are totally calm, doing our work or whatever, and then suddenly we hear a trigger sound and our bodies go through a physiological change that we cannot control. Our breathing and heartbeat becomes rapid. Our chests tighten. We have fight or flight reactions. But we can only escape through earphones or drugs or running away or asking the other person to refrain. All of the above are not solutions, nor do they necessarily work. I have yet to find earphones that will block out the trigger sound, no matter how soft it might be. 4S has a direct impact on how we function as human beings. The quality of our relationships, as well as our ability to work, are threatened by both the disorder itself, but also by our only means of coping with it (as mentioned just previously). When we speak up about this acute sensitivity, there are blatant negative reprisals, as if we are making it up or trying to be rude. We do not choose the sounds that hurt us; they choose us. And we have no way of escaping this nightmare. We have all tried various medical/psychological approaches, but most physicians we have no knowledge of this disorder and therefore shoot in the dark, misdiagnosing us with the closest thing they can - as either OCD (though we don't fit the classic symptoms in any other way) or a hearing disorder that has no visible cause. Many of us feel that this is genetic as more than one in our families share the same symptoms. And, by the way, In seeking medical treatment, most of us have been provided with pink noise CDs which don't help or with anti-depressent or sedative meds. Of course, these meds have side effects which make us zombies or physically debilitated.Other than 4S, and its intolerable nature, we are normal, functioning human beings, usually highly intelligent, loving and social. We at the Soundsensitivity newsgroup are trying to get the word out to the world and esp. to the medical community in the hope that someone will take it seriously and attempt to find a cure or at least a treatment that works. Ryman208 Waverly PlaceWaukesha, WI -- Joan V.My Blog: http://www.xanga.com/hbasedmomof6Legitimate Jobs From Home http://wahparents.blogspot.com/ Read about My Parenting Paradigm Shifthttp://www.freewebs.com/suffer-the-little-children/ -- Joan V.My Blog: http://www.xanga.com/hbasedmomof6Legitimate Jobs From Homehttp://wahparents.blogspot.com/ Read about My Parenting Paradigm Shifthttp://www.freewebs.com/suffer-the-little-children/ Quote Link to comment Share on other sites More sharing options...
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