Guest guest Posted September 20, 2011 Report Share Posted September 20, 2011 Hi all,I can say from experience, that I did not find hyperacusis.net forum a friendly place to participate, for me personally with my type of misophonia. Although there are many many members at the hyperacusis forum who are really nice and helpful especially for those who also struggle with hyperacusis, they don't seem to be posting currently. So I do not want the negative things going on over there, to be in anyway attributed to those nice members who are staying out of the current debates about misophonia.There is one individual, his name is Rob, who I highly advise all to stay away from, unless you like to be cross-examed, picked apart and turned against Dr. J.IMO from what I have seen over the past three years at the hyperacusis.net, is that this one individual has had a vendetta against Dr. and is trying to compete for members from her groups to indoctrinate. He has been hostile and condescending to Dr. J at every turn. STAY AWAY from ROB! Rob and the administrator Dan have a different take on misophonia, it may be worth reading about their views over there to get all sides perspective. But I recommend you do not participate, it is not a pleasant experience IMO, although it has worked out well for others here.Please do not allow your self to be experimented on public-ally or especially privately, Rob is not qualified to do so, IMO. I have been a trouble maker over there, but I feel that I need to defend this group and have been quite harsh about it. I can't think of what else to do.I am sorry if anyone finds my hostility over there, to reflect badly on our group. If so I will tone it down, besides my posts get deleted if I come on to strong anyway.maikaefer aka whitenoiserockerTo: Soundsensitivity Sent: Tuesday, September 20, 2011 5:03 AMSubject: Careful note... For those who are perhaps also on the HN board, be extremely diligent in subjecting yourself to any sort of open dialogue about 4S or misophonia there. I cannot recommend the HN as a site for those with anything OTHER than hyperacusis. Someone sends these posts directly to one of the fellows there, which cannot be prevented, it is possible he is even a member here, but nonetheless, my experiences there have left me with an extremely cautious and alert attitude, so I am passing this along anyway. Use caution when you expose yourself on public internet sites, that is just common sense anywhere in the world, but more of a problem when you are vulnerable. With the best for all in mind, Dr. J Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 20, 2011 Report Share Posted September 20, 2011 09-20-11 TuesdayI am relieved to hear that I am not crazy…but it’s being difficult to get people to understand my diagnosis including the medical professionals. I had more hope after this recent media attention, on the NYT and the Today show.Alone with none to listen two years ago, I went to get an education to have a voice, I registered with the Disability office at bmcc/cuny where was rebuffed and told not to try to take advantage of the people that have a real disability… I struggled to make it, but was it was just to much to handle, I had no choice but withdraw.I am incapacitated and broke for most of my 55 years alone with no support from family, community or the system which misdiagnosed and made my life a inferno 20 + years ago after I went to seek treatment for TMJ, Migraine and Hearing problems at the metropolitan hospital, I was sent to a psychiatric ward instead against my will and with none to call for help. Soon after they diagnosed me with a mental disorder. son after I try to commit suicide many times and became homeless, I still suffering the consequences in a NYC SRO where I’ve been sexually assaulted, harassed, bullied, my basic rights ignored by the staff (from director to janitor) at the sro where I live, they enjoy looking at me and blow a bubble, some times trapping me in a corner and popping right into my ears over and over again... If they don’t have a piece of gum in their mouth when they see me they just mimic it to trigger a reaction, they think my pain is funny, I don't see how people who do it think it's ok. I feel hopeless, lonely, deserving to be punished, but why? Is there any compassion from humans? The director of the SRO where I live chews gum viciously, when i approached with humility to explain the torture and how severe it He told me that I wasn't going to get my way with Him with mind games and since them everyone else think it's a fair game because they can trigger me to act out and I have none to go to complain, but I suffer in silence with the echo of it in my brain over and over...again every time I step out of my room is a fight and flight situation. I don't want to live like this any more so I have told my Dr. a psychologist that I will kill myselsef by april/2012 if I cannot exit this living nightmare I have to go thru every day in the most dangerous place in NYC. I am hopeless.I just need someone to understand it, have compassion I am trapped with no hope living in poverty and none that understands to turn.I hope in this group people may be able to understand me.marineyTo: "Soundsensitivity " <Soundsensitivity >Sent: Tuesday, September 20, 2011 9:11 AMSubject: Re: Careful note... Hi all,I can say from experience, that I did not find hyperacusis.net forum a friendly place to participate, for me personally with my type of misophonia. Although there are many many members at the hyperacusis forum who are really nice and helpful especially for those who also struggle with hyperacusis, they don't seem to be posting currently. So I do not want the negative things going on over there, to be in anyway attributed to those nice members who are staying out of the current debates about misophonia.There is one individual, his name is Rob, who I highly advise all to stay away from, unless you like to be cross-examed, picked apart and turned against Dr. J.IMO from what I have seen over the past three years at the hyperacusis.net, is that this one individual has had a vendetta against Dr. and is trying to compete for members from her groups to indoctrinate. He has been hostile and condescending to Dr. J at every turn. STAY AWAY from ROB! Rob and the administrator Dan have a different take on misophonia, it may be worth reading about their views over there to get all sides perspective. But I recommend you do not participate, it is not a pleasant experience IMO, although it has worked out well for others here.Please do not allow your self to be experimented on public-ally or especially privately, Rob is not qualified to do so, IMO. I have been a trouble maker over there, but I feel that I need to defend this group and have been quite harsh about it. I can't think of what else to do.I am sorry if anyone finds my hostility over there, to reflect badly on our group. If so I will tone it down, besides my posts get deleted if I come on to strong anyway.maikaefer aka whitenoiserockerTo: Soundsensitivity Sent: Tuesday, September 20, 2011 5:03 AMSubject: Careful note... For those who are perhaps also on the HN board, be extremely diligent in subjecting yourself to any sort of open dialogue about 4S or misophonia there. I cannot recommend the HN as a site for those with anything OTHER than hyperacusis. Someone sends these posts directly to one of the fellows there, which cannot be prevented, it is possible he is even a member here, but nonetheless, my experiences there have left me with an extremely cautious and alert attitude, so I am passing this along anyway. Use caution when you expose yourself on public internet sites, that is just common sense anywhere in the world, but more of a problem when you are vulnerable. With the best for all in mind, Dr. J Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 20, 2011 Report Share Posted September 20, 2011 ps. I see they have started to instantly delete my posts now anyway, the truth can sometimes hurt. It's just as well, arguing there is futile and will only frustrate those who try.To: "Soundsensitivity " <Soundsensitivity >Sent: Tuesday, September 20, 2011 8:11 AMSubject: Re: Careful note... Hi all,I can say from experience, that I did not find hyperacusis.net forum a friendly place to participate, for me personally with my type of misophonia. Although there are many many members at the hyperacusis forum who are really nice and helpful especially for those who also struggle with hyperacusis, they don't seem to be posting currently. So I do not want the negative things going on over there, to be in anyway attributed to those nice members who are staying out of the current debates about misophonia.There is one individual, his name is Rob, who I highly advise all to stay away from, unless you like to be cross-examed, picked apart and turned against Dr. J.IMO from what I have seen over the past three years at the hyperacusis.net, is that this one individual has had a vendetta against Dr. and is trying to compete for members from her groups to indoctrinate. He has been hostile and condescending to Dr. J at every turn. STAY AWAY from ROB! Rob and the administrator Dan have a different take on misophonia, it may be worth reading about their views over there to get all sides perspective. But I recommend you do not participate, it is not a pleasant experience IMO, although it has worked out well for others here.Please do not allow your self to be experimented on public-ally or especially privately, Rob is not qualified to do so, IMO. I have been a trouble maker over there, but I feel that I need to defend this group and have been quite harsh about it. I can't think of what else to do.I am sorry if anyone finds my hostility over there, to reflect badly on our group. If so I will tone it down, besides my posts get deleted if I come on to strong anyway.maikaefer aka whitenoiserockerTo: Soundsensitivity Sent: Tuesday, September 20, 2011 5:03 AMSubject: Careful note... For those who are perhaps also on the HN board, be extremely diligent in subjecting yourself to any sort of open dialogue about 4S or misophonia there. I cannot recommend the HN as a site for those with anything OTHER than hyperacusis. Someone sends these posts directly to one of the fellows there, which cannot be prevented, it is possible he is even a member here, but nonetheless, my experiences there have left me with an extremely cautious and alert attitude, so I am passing this along anyway. Use caution when you expose yourself on public internet sites, that is just common sense anywhere in the world, but more of a problem when you are vulnerable. With the best for all in mind, Dr. J Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 20, 2011 Report Share Posted September 20, 2011 09-20-11 TuesdayI am relieved to hear that I am not crazy…but it’s being difficult to get people to understand my diagnosis including the medical professionals. I had more hope after this recent media attention, on the NYT and the Today show.Alone with none to listen two years ago, I went to get an education to have a voice, I registered with the Disability office at bmcc/cuny where was rebuffed and told not to try to take advantage of the people that have a real disability… I struggled to make it, but was it was just to much to handle, I had no choice but withdraw.I am incapacitated and broke for most of my 55 years alone with no support from family, community or the system which misdiagnosed and made my life a inferno 20 + years ago after I went to seek treatment for TMJ, Migraine and Hearing problems at the metropolitan hospital, I was sent to a psychiatric ward instead against my will and with none to call for help. Soon after they diagnosed me with a mental disorder. son after I try to commit suicide many times and became homeless, I still suffering the consequences in a NYC SRO where I’ve been sexually assaulted, harassed, bullied, my basic rights ignored by the staff (from director to janitor) at the sro where I live, they enjoy looking at me and blow a bubble, some times trapping me in a corner and popping right into my ears over and over again... If they don’t have a piece of gum in their mouth when they see me they just mimic it to trigger a reaction, they think my pain is funny, I don't see how people who do it think it's ok. I feel hopeless, lonely, deserving to be punished, but why? Is there any compassion from humans? The director of the SRO where I live chews gum viciously, when i approached with humility to explain the torture and how severe it He told me that I wasn't going to get my way with Him with mind games and since them everyone else think it's a fair game because they can trigger me to act out and I have none to go to complain, but I suffer in silence with the echo of it in my brain over and over...again every time I step out of my room is a fight and flight situation. I don't want to live like this any more so I have told my Dr. a psychologist that I will kill myselsef by april/2012 if I cannot exit this living nightmare I have to go thru every day in the most dangerous place in NYC. I am hopeless.I just need someone to understand it, have compassion I am trapped with no hope living in poverty and none that understands to turn.I hope in this group people may be able to understand me.marineythanks Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 20, 2011 Report Share Posted September 20, 2011  Dear Marieny, There should be an ombudsman there to assist you. They are usually present in most group living situations. I am touched by your email and your journey. Please reach out, further than you ever had. Your life is worth while, not worthless as others have made you feel. Take it one day at a time, one moment at a time if that is all you can do. But, please, do not plan your departure. You are not alone, all though you feel that way. PLEASE contact someone today. peg Re: Careful note... 09-20-11 Tuesday I am relieved to hear that I am not crazy…but it’s being difficult to get people to understand my diagnosis including the medical professionals. I had more hope after this recent media attention, on the NYT and the Today show. Alone with none to listen two years ago, I went to get an education to have a voice, I registered with the Disability office at bmcc/cuny where was rebuffed and told not to try to take advantage of the people that have a real disability… I struggled to make it, but was it was just to much to handle, I had no choice but withdraw. I am incapacitated and broke for most of my 55 years alone with no support from family, community or the system which misdiagnosed and made my life a inferno 20 + years ago after I went to seek treatment for TMJ, Migraine and Hearing problems at the metropolitan hospital, I was sent to a psychiatric ward instead against my will and with none to call for help. Soon after they diagnosed me with a mental disorder. son after I try to commit suicide many times and became homeless, I still suffering the consequences in a NYC SRO where I’ve been sexually assaulted, harassed, bullied, my basic rights ignored by the staff (from director to janitor) at the sro where I live, they enjoy looking at me and blow a bubble, some times trapping me in a corner and popping right into my ears over and over again... If they don’t have a piece of gum in their mouth when they see me they just mimic it to trigger a reaction, they think my pain is funny, I don't see how people who do it think it's ok. I feel hopeless, lonely, deserving to be punished, but why? Is there any compassion from humans? The director of the SRO where I live chews gum viciously, when i approached with humility to explain the torture and how severe it He told me that I wasn't going to get my way with Him with mind games and since them everyone else think it's a fair game because they can trigger me to act out and I have none to go to complain, but I suffer in silence with the echo of it in my brain over and over...again every time I step out of my room is a fight and flight situation. I don't want to live like this any more so I have told my Dr. a psychologist that I will kill myselsef by april/2012 if I cannot exit this living nightmare I have to go thru every day in the most dangerous place in NYC. I am hopeless. I just need someone to understand it, have compassion I am trapped with no hope living in poverty and none that understands to turn. I hope in this group people may be able to understand me. mariney thanks Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 20, 2011 Report Share Posted September 20, 2011 What does HN stand for when you say "HN board"? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 20, 2011 Report Share Posted September 20, 2011 Mariney,I genuinely hope you can get the help you need. You are not judged here and we sympathize and empathize with you. Please bring the NY Times article and the sound sensitivity website address to the attention of your psychologist.Heidi 09-20-11 TuesdayI am relieved to hear that I am not crazy…but it’s being difficult to get people to understand my diagnosis including the medical professionals. I had more hope after this recent media attention, on the NYT and the Today show.Alone with none to listen two years ago, I went to get an education to have a voice, I registered with the Disability office at bmcc/cuny where was rebuffed and told not to try to take advantage of the people that have a real disability… I struggled to make it, but was it was just to much to handle, I had no choice but withdraw.I am incapacitated and broke for most of my 55 years alone with no support from family, community or the system which misdiagnosed and made my life a inferno 20 + years ago after I went to seek treatment for TMJ, Migraine and Hearing problems at the metropolitan hospital, I was sent to a psychiatric ward instead against my will and with none to call for help. Soon after they diagnosed me with a mental disorder. son after I try to commit suicide many times and became homeless, I still suffering the consequences in a NYC SRO where I’ve been sexually assaulted, harassed, bullied, my basic rights ignored by the staff (from director to janitor) at the sro where I live, they enjoy looking at me and blow a bubble, some times trapping me in a corner and popping right into my ears over and over again... If they don’t have a piece of gum in their mouth when they see me they just mimic it to trigger a reaction, they think my pain is funny, I don't see how people who do it think it's ok. I feel hopeless, lonely, deserving to be punished, but why? Is there any compassion from humans? The director of the SRO where I live chews gum viciously, when i approached with humility to explain the torture and how severe it He told me that I wasn't going to get my way with Him with mind games and since them everyone else think it's a fair game because they can trigger me to act out and I have none to go to complain, but I suffer in silence with the echo of it in my brain over and over...again every time I step out of my room is a fight and flight situation. I don't want to live like this any more so I have told my Dr. a psychologist that I will kill myselsef by april/2012 if I cannot exit this living nightmare I have to go thru every day in the most dangerous place in NYC. I am hopeless.I just need someone to understand it, have compassion I am trapped with no hope living in poverty and none that understands to turn.I hope in this group people may be able to understand me.marineythanks Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 21, 2011 Report Share Posted September 21, 2011 Hi Mariney,Welcome to the group, as Heidi said you will get support and understanding here, so it's really good that you found us. Most of us have had the same problem with trying to get people even doctors to take this seriously.I'm sorry to hear that your life has been so hard, I often worry that I may end up homeless someday. Thankfully I have wonderful parents who support me right now, even though they don't understand why it is so hard for me to stay in a job that pays a living wage.I hope your psychologist will help you change your mind about that April date. I have great hope that now we have gotten all this media attention, that there will more and better treatments coming along soon. So please hang in there.I highly recommend that you have some options to help to mask sounds. A fan can help to drown out noises in your room. I also use a ipod to help mask sounds as well. You might be able to find an inexpensive mp3 player on ebay and then load a music file of white noise onto it to listen to with headphones. I have found this can really help when coping is so difficult around other people. Below is a website that you can get free white noise files to download on to a computer and transfer to your mp3 player. Most people find the pink and brown noise even more soothing. Maybe your psychologist can help you with getting this kind of tool together. Also I hope your psychologist can help you find a safer place to live. Below is a link to a list of published articles at the public site to print out and show to people to help them to understand that this is a real thing.Hoping there are better days ahead for you.maikaefer http://whitenoisemp3s.com/free-white-noisehttp://www.soundsensitivity.info/Forum/viewtopic.php?f=16 & t=262From: Heidi Salerno To: Soundsensitivity Sent: Tuesday, September 20, 2011 10:36 PMSubject: Re: Careful note... Mariney,I genuinely hope you can get the help you need. You are not judged here and we sympathize and empathize with you. Please bring the NY Times article and the sound sensitivity website address to the attention of your psychologist.Heidi 09-20-11 TuesdayI am relieved to hear that I am not crazy…but it’s being difficult to get people to understand my diagnosis including the medical professionals. I had more hope after this recent media attention, on the NYT and the Today show.Alone with none to listen two years ago, I went to get an education to have a voice, I registered with the Disability office at bmcc/cuny where was rebuffed and told not to try to take advantage of the people that have a real disability… I struggled to make it, but was it was just to much to handle, I had no choice but withdraw.I am incapacitated and broke for most of my 55 years alone with no support from family, community or the system which misdiagnosed and made my life a inferno 20 + years ago after I went to seek treatment for TMJ, Migraine and Hearing problems at the metropolitan hospital, I was sent to a psychiatric ward instead against my will and with none to call for help. Soon after they diagnosed me with a mental disorder. son after I try to commit suicide many times and became homeless, I still suffering the consequences in a NYC SRO where I’ve been sexually assaulted, harassed, bullied, my basic rights ignored by the staff (from director to janitor) at the sro where I live, they enjoy looking at me and blow a bubble, some times trapping me in a corner and popping right into my ears over and over again... If they don’t have a piece of gum in their mouth when they see me they just mimic it to trigger a reaction, they think my pain is funny, I don't see how people who do it think it's ok. I feel hopeless, lonely, deserving to be punished, but why? Is there any compassion from humans? The director of the SRO where I live chews gum viciously, when i approached with humility to explain the torture and how severe it He told me that I wasn't going to get my way with Him with mind games and since them everyone else think it's a fair game because they can trigger me to act out and I have none to go to complain, but I suffer in silence with the echo of it in my brain over and over...again every time I step out of my room is a fight and flight situation. I don't want to live like this any more so I have told my Dr. a psychologist that I will kill myselsef by april/2012 if I cannot exit this living nightmare I have to go thru every day in the most dangerous place in NYC. I am hopeless.I just need someone to understand it, have compassion I am trapped with no hope living in poverty and none that understands to turn.I hope in this group people may be able to understand me.marineythanks Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 21, 2011 Report Share Posted September 21, 2011 Hi lou,HN stands for the Hyperacusis Network which is a website and message board for people with Hyperacusis, a malady that most people here do not have. At the HN there are a couple of people in charge, who strongly believe that our type of misophonia is purely psychologically based and that it is same as the type of misophonia that can develop from having hyperacusis and/or tinnitus. Their type of misophonia is different than the type we suffer from, IMO and those at the HN who have strong feeling against separating misophonia into subsets have no business meddling. They do not fully understand what we are going through, IMO, but do want to help.The HN can be a very helpful place to go for those with hyperacusis. Those moderating the HN website, strongly believe that CBT and exposure to the sounds is the cure, I have not found CBT to be a cure myself, but CBT IS very helpful in many ways for managing misophonia. I have no problem with the HN's recommendation for CBT for us, but one individual there tries to practice psychotherapy over the internet, which is wrong in so many ways IMO, especially since he has no qualifications to do so. And he thinks that masking triggers with broadband noise is entirely the wrong approach and even harmful. And the arguments about misophonia over there are intense, very negative and useless, IMO. It is a public website so anything personal you share there will be out for the world to see. So beware.Outside of the heated misophonia debates, the HN otherwise provides much needed support for people with hyperacusis. Like the us, people with hyperacusis also have a malady that is not well known and they are suffering too.maikaeferTo: "Soundsensitivity " <Soundsensitivity >Sent: Tuesday, September 20, 2011 12:12 PMSubject: Re: Careful note... What does HN stand for when you say "HN board"? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 21, 2011 Report Share Posted September 21, 2011 Maikaefer, I went to the link you posted concerning white noise. Thank you for that and I plan on downloading several files to my mp3 player. An auditory observation I made while listening to the water, is I instantly have to make a trip to the bathroom when I hear water running. My daughter does also, and it can be quite hilarious when she gets home from school, she comes straight to the kitchen, and if I turn on the water, she can barely make it to the bathroom in time. She has to cross her legs while attempting to walk, and WE have to laugh. It made me wonder about the correlation of this automatic response, and the response us misophonics have to chewing, having to yell out. Barbara > >  > > > > > >09-20-11 Tuesday > >I am relieved to hear that I am not crazy…but it’s  being difficult to get people to understand my diagnosis including the medical professionals. I had more hope after this recent media attention, on the NYT and the Today show. > >Alone with none to listen two years ago, I went to get an education to have a voice, I registered with the Disability office at bmcc/cuny where was rebuffed and told not to try to take advantage of the people that have a real disability… I struggled to make it, but was it was just to much to handle, I had no choice but withdraw. > >I am  incapacitated and broke for most of my 55 years alone with no support from family, community or the system which misdiagnosed and made my life a inferno 20 + years ago after I went to seek treatment for TMJ, Migraine and Hearing problems at the metropolitan hospital, I was sent to a psychiatric ward instead against my will and with none to call for help. Soon after they diagnosed me with a mental disorder. son after I try to commit suicide many times and became homeless, I still suffering the consequences in a NYC SRO where I’ve been sexually assaulted, harassed, bullied, my basic rights ignored by the staff (from director to janitor) at the sro where I live, they enjoy looking at me and blow a bubble, some times trapping me in a corner and popping right into my ears over and over again... If they don’t have a piece of gum in their mouth when they see me they just mimic it to trigger a reaction, they think my pain is funny, I don't see how > people who do it think it's ok. I feel hopeless, lonely, deserving to be punished, but why? Is there any compassion from humans? The director of the SRO where I live chews gum viciously, when i approached  with humility to explain the torture and how severe it He told me that I wasn't going to get my way with Him with mind games and since them everyone else think it's a fair game because they can trigger me to act out and I have none to go to complain, but I suffer in silence with the echo of it in my brain over and over...again every time I step out of my room is a fight and flight situation. I don't want to live like this any more so I have told my Dr. a psychologist that I will kill myselsef by april/2012 if I cannot exit this living nightmare I have to go thru every day in the most dangerous place in NYC. I am hopeless. > >I just need someone to understand it, have compassion I am trapped with no hope living in poverty and none that understands to turn. > >I hope in this group people may be able to understand me. > >mariney > >thanks > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 21, 2011 Report Share Posted September 21, 2011 I hate the sound of white noise. I already have to listen to ot when I wear earplugs. It's so annoying. > > > >  > > > > > > > > >09-20-11 Tuesday > > >I am relieved to hear that I am not crazy…but it’s  being difficult to get people to understand my diagnosis including the medical professionals. I had more hope after this recent media attention, on the NYT and the Today show. > > >Alone with none to listen two years ago, I went to get an education to have a voice, I registered with the Disability office at bmcc/cuny where was rebuffed and told not to try to take advantage of the people that have a real disability… I struggled to make it, but was it was just to much to handle, I had no choice but withdraw. > > >I am  incapacitated and broke for most of my 55 years alone with no support from family, community or the system which misdiagnosed and made my life a inferno 20 + years ago after I went to seek treatment for TMJ, Migraine and Hearing problems at the metropolitan hospital, I was sent to a psychiatric ward instead against my will and with none to call for help. Soon after they diagnosed me with a mental disorder. son after I try to commit suicide many times and became homeless, I still suffering the consequences in a NYC SRO where I’ve been sexually assaulted, harassed, bullied, my basic rights ignored by the staff (from director to janitor) at the sro where I live, they enjoy looking at me and blow a bubble, some times trapping me in a corner and popping right into my ears over and over again... If they don’t have a piece of gum in their mouth when they see me they just mimic it to trigger a reaction, they think my pain is funny, I don't see how > > people who do it think it's ok. I feel hopeless, lonely, deserving to be punished, but why? Is there any compassion from humans? The director of the SRO where I live chews gum viciously, when i approached  with humility to explain the torture and how severe it He told me that I wasn't going to get my way with Him with mind games and since them everyone else think it's a fair game because they can trigger me to act out and I have none to go to complain, but I suffer in silence with the echo of it in my brain over and over...again every time I step out of my room is a fight and flight situation. I don't want to live like this any more so I have told my Dr. a psychologist that I will kill myselsef by april/2012 if I cannot exit this living nightmare I have to go thru every day in the most dangerous place in NYC. I am hopeless. > > >I just need someone to understand it, have compassion I am trapped with no hope living in poverty and none that understands to turn. > > >I hope in this group people may be able to understand me. > > >mariney > > >thanks > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 21, 2011 Report Share Posted September 21, 2011 Try brown or pink noise > I hate the sound of white noise. I already have to listen to ot when I wear earplugs. It's so annoying. > > >> > >> >  >> > >>> > >>> > >09-20-11 Tuesday >> > >I am relieved to hear that I am not crazy…but it’s  being difficult to get people to understand my diagnosis including the medical professionals. I had more hope after this recent media attention, on the NYT and the Today show. >> > >Alone with none to listen two years ago, I went to get an education to have a voice, I registered with the Disability office at bmcc/cuny where was rebuffed and told not to try to take advantage of the people that have a real disability… I struggled to make it, but was it was just to much to handle, I had no choice but withdraw. >> > >I am  incapacitated and broke for most of my 55 years alone with no support from family, community or the system which misdiagnosed and made my life a inferno 20 + years ago after I went to seek treatment for TMJ, Migraine and Hearing problems at the metropolitan hospital, I was sent to a psychiatric ward instead against my will and with none to call for help. Soon after they diagnosed me with a mental disorder. son after I try to commit suicide many times and became homeless, I still suffering the consequences in a NYC SRO where I’ve been sexually assaulted, harassed, bullied, my basic rights ignored by the staff (from director to janitor) at the sro where I live, they enjoy looking at me and blow a bubble, some times trapping me in a corner and popping right into my ears over and over again... If they don’t have a piece of gum in their mouth when they see me they just mimic it to trigger a reaction, they think my pain is funny, I don't see how >> > people who do it think it's ok. I feel hopeless, lonely, deserving to be punished, but why? Is there any compassion from humans? The director of the SRO where I live chews gum viciously, when i approached  with humility to explain the torture and how severe it He told me that I wasn't going to get my way with Him with mind games and since them everyone else think it's a fair game because they can trigger me to act out and I have none to go to complain, but I suffer in silence with the echo of it in my brain over and over...again every time I step out of my room is a fight and flight situation. I don't want to live like this any more so I have told my Dr. a psychologist that I will kill myselsef by april/2012 if I cannot exit this living nightmare I have to go thru every day in the most dangerous place in NYC. I am hopeless. >> > >I just need someone to understand it, have compassion I am trapped with no hope living in poverty and none that understands to turn.>> > >I hope in this group people may be able to understand me. >> > >mariney>> > >thanks>> > >>> > >>> > >>> > >>> >>>> > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 21, 2011 Report Share Posted September 21, 2011 water sends me straight to the bathroom too. My ex-husband could make the sound of dripping water perfectly with his check and he would torture me on rides home. That's a good question Barbara Maikaefer, I went to the link you posted concerning white noise. Thank you for that and I plan on downloading several files to my mp3 player. An auditory observation I made while listening to the water, is I instantly have to make a trip to the bathroom when I hear water running. My daughter does also, and it can be quite hilarious when she gets home from school, she comes straight to the kitchen, and if I turn on the water, she can barely make it to the bathroom in time. She has to cross her legs while attempting to walk, and WE have to laugh. It made me wonder about the correlation of this automatic response, and the response us misophonics have to chewing, having to yell out. Barbara > >  > > > > > >09-20-11 Tuesday > >I am relieved to hear that I am not crazy…but it’s  being difficult to get people to understand my diagnosis including the medical professionals. I had more hope after this recent media attention, on the NYT and the Today show. > >Alone with none to listen two years ago, I went to get an education to have a voice, I registered with the Disability office at bmcc/cuny where was rebuffed and told not to try to take advantage of the people that have a real disability… I struggled to make it, but was it was just to much to handle, I had no choice but withdraw. > >I am  incapacitated and broke for most of my 55 years alone with no support from family, community or the system which misdiagnosed and made my life a inferno 20 + years ago after I went to seek treatment for TMJ, Migraine and Hearing problems at the metropolitan hospital, I was sent to a psychiatric ward instead against my will and with none to call for help. Soon after they diagnosed me with a mental disorder. son after I try to commit suicide many times and became homeless, I still suffering the consequences in a NYC SRO where I’ve been sexually assaulted, harassed, bullied, my basic rights ignored by the staff (from director to janitor) at the sro where I live, they enjoy looking at me and blow a bubble, some times trapping me in a corner and popping right into my ears over and over again... If they don’t have a piece of gum in their mouth when they see me they just mimic it to trigger a reaction, they think my pain is funny, I don't see how > people who do it think it's ok. I feel hopeless, lonely, deserving to be punished, but why? Is there any compassion from humans? The director of the SRO where I live chews gum viciously, when i approached  with humility to explain the torture and how severe it He told me that I wasn't going to get my way with Him with mind games and since them everyone else think it's a fair game because they can trigger me to act out and I have none to go to complain, but I suffer in silence with the echo of it in my brain over and over...again every time I step out of my room is a fight and flight situation. I don't want to live like this any more so I have told my Dr. a psychologist that I will kill myselsef by april/2012 if I cannot exit this living nightmare I have to go thru every day in the most dangerous place in NYC. I am hopeless. > >I just need someone to understand it, have compassion I am trapped with no hope living in poverty and none that understands to turn. > >I hope in this group people may be able to understand me. > >mariney > >thanks > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 21, 2011 Report Share Posted September 21, 2011 I have. I don't like them too. It's annoying to keep hearing that white noise sound. > >> > > >> >  > >> > > > >> > > > >> > >09-20-11 Tuesday > >> > >I am relieved to hear that I am not crazy…but it’s  being > difficult to get people to understand my diagnosis including the medical > professionals. I had more hope after this recent media attention, on the NYT > and the Today show. > >> > >Alone with none to listen two years ago, I went to get an education to > have a voice, I registered with the Disability office at bmcc/cuny where was > rebuffed and told not to try to take advantage of the people that have a > real disability… I struggled to make it, but was it was just to much to > handle, I had no choice but withdraw. > >> > >I am  incapacitated and broke for most of my 55 years alone with no > support from family, community or the system which misdiagnosed and made my > life a inferno 20 + years ago after I went to seek treatment for TMJ, > Migraine and Hearing problems at the metropolitan hospital, I was sent to a > psychiatric ward instead against my will and with none to call for help. > Soon after they diagnosed me with a mental disorder. son after I try to > commit suicide many times and became homeless, I still suffering the > consequences in a NYC SRO where I’ve been sexually assaulted, harassed, > bullied, my basic rights ignored by the staff (from director to janitor) at > the sro where I live, they enjoy looking at me and blow a bubble, some times > trapping me in a corner and popping right into my ears over and over > again... If they don’t have a piece of gum in their mouth when they see me > they just mimic it to trigger a reaction, they think my pain is funny, I > don't see how > >> > people who do it think it's ok. I feel hopeless, lonely, deserving to > be punished, but why? Is there any compassion from humans? The director of > the SRO where I live chews gum viciously, when i approached  with humility > to explain the torture and how severe it He told me that I wasn't going to > get my way with Him with mind games and since them everyone else think it's > a fair game because they can trigger me to act out and I have none to go to > complain, but I suffer in silence with the echo of it in my brain over and > over...again every time I step out of my room is a fight and flight > situation. I don't want to live like this any more so I have told my Dr. a > psychologist that I will kill myselsef by april/2012 if I cannot exit this > living nightmare I have to go thru every day in the most dangerous place in > NYC. I am hopeless. > >> > >I just need someone to understand it, have compassion I am trapped > with no hope living in poverty and none that understands to turn. > >> > >I hope in this group people may be able to understand me. > >> > >mariney > >> > >thanks > >> > > > >> > > > >> > > > >> > > > >> > > >> > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 21, 2011 Report Share Posted September 21, 2011 That's interesting. My mom has to go to the bathroom everytime we leave or arive somewhere. > > > > > >  > > > > > > > > > > > >09-20-11 Tuesday > > > >I am relieved to hear that I am not crazy…but it’s  being difficult to get people to understand my diagnosis including the medical professionals. I had more hope after this recent media attention, on the NYT and the Today show. > > > >Alone with none to listen two years ago, I went to get an education to have a voice, I registered with the Disability office at bmcc/cuny where was rebuffed and told not to try to take advantage of the people that have a real disability… I struggled to make it, but was it was just to much to handle, I had no choice but withdraw. > > > >I am  incapacitated and broke for most of my 55 years alone with no support from family, community or the system which misdiagnosed and made my life a inferno 20 + years ago after I went to seek treatment for TMJ, Migraine and Hearing problems at the metropolitan hospital, I was sent to a psychiatric ward instead against my will and with none to call for help. Soon after they diagnosed me with a mental disorder. son after I try to commit suicide many times and became homeless, I still suffering the consequences in a NYC SRO where I’ve been sexually assaulted, harassed, bullied, my basic rights ignored by the staff (from director to janitor) at the sro where I live, they enjoy looking at me and blow a bubble, some times trapping me in a corner and popping right into my ears over and over again... If they don’t have a piece of gum in their mouth when they see me they just mimic it to trigger a reaction, they think my pain is funny, I don't see how > > > people who do it think it's ok. I feel hopeless, lonely, deserving to be punished, but why? Is there any compassion from humans? The director of the SRO where I live chews gum viciously, when i approached  with humility to explain the torture and how severe it He told me that I wasn't going to get my way with Him with mind games and since them everyone else think it's a fair game because they can trigger me to act out and I have none to go to complain, but I suffer in silence with the echo of it in my brain over and over...again every time I step out of my room is a fight and flight situation. I don't want to live like this any more so I have told my Dr. a psychologist that I will kill myselsef by april/2012 if I cannot exit this living nightmare I have to go thru every day in the most dangerous place in NYC. I am hopeless. > > > >I just need someone to understand it, have compassion I am trapped with no hope living in poverty and none that understands to turn. > > > >I hope in this group people may be able to understand me. > > > >mariney > > > >thanks > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 22, 2011 Report Share Posted October 22, 2011 I'm so sorry you've had to suffer so long...i can't even imagine how PAINFUL all of that must have been for you. People really do understand here. I do not have 4s but my husband does, its like he's in physical pain all the time from people swallowing, chewing, clicking pens... I feel hopeful lately too...i have to be. I can't imagine the pain my hubby is in but from what i see he is and i'm in pain as well b/c i want to help him so badly. I'm not giving up ...I promise!! Any info we get i'll let ya know. You too now have some support and with that also comes hope Trish > > 09-20-11 Tuesday > I am relieved to hear that I am not crazy…but it’s  being difficult to get people to understand my diagnosis including the medical professionals. I had more hope after this recent media attention, on the NYT and the Today show. > Alone with none to listen two years ago, I went to get an education to have a voice, I registered with the Disability office at bmcc/cuny where was rebuffed and told not to try to take advantage of the people that have a real disability… I struggled to make it, but was it was just to much to handle, I had no choice but withdraw. > I am  incapacitated and broke for most of my 55 years alone with no support from family, community or the system which misdiagnosed and made my life a inferno 20 + years ago after I went to seek treatment for TMJ, Migraine and Hearing problems at the metropolitan hospital, I was sent to a psychiatric ward instead against my will and with none to call for help. Soon after they diagnosed me with a mental disorder. son after I try to commit suicide many times and became homeless, I still suffering the consequences in a NYC SRO where I’ve been sexually assaulted, harassed, bullied, my basic rights ignored by the staff (from director to janitor) at the sro where I live, they enjoy looking at me and blow a bubble, some times trapping me in a corner and popping right into my ears over and over again... If they don’t have a piece of gum in their mouth when they see me they just mimic it to trigger a reaction, they think my pain is funny, I don't see how > people who do it think it's ok. I feel hopeless, lonely, deserving to be punished, but why? Is there any compassion from humans? The director of the SRO where I live chews gum viciously, when i approached  with humility to explain the torture and how severe it He told me that I wasn't going to get my way with Him with mind games and since them everyone else think it's a fair game because they can trigger me to act out and I have none to go to complain, but I suffer in silence with the echo of it in my brain over and over...again every time I step out of my room is a fight and flight situation. I don't want to live like this any more so I have told my Dr. a psychologist that I will kill myselsef by april/2012 if I cannot exit this living nightmare I have to go thru every day in the most dangerous place in NYC. I am hopeless. > I just need someone to understand it, have compassion I am trapped with no hope living in poverty and none that understands to turn. > I hope in this group people may be able to understand me. > mariney > > > > ________________________________ > > To: " Soundsensitivity " <Soundsensitivity > > Sent: Tuesday, September 20, 2011 9:11 AM > Subject: Re: Careful note... > > >  > Hi all, > I can say from experience, that I did not find hyperacusis.net forum a friendly place to participate, for me personally with my type of misophonia. > > Although there are many many members at the hyperacusis forum who are really nice and helpful especially for those who also struggle with hyperacusis, they don't seem to be posting currently. So I do not want the negative things going on over there, to be in anyway attributed to those nice members who are staying out of the current debates about misophonia. > > There is one individual, his name is Rob, who I highly advise all to stay away from, unless you like to be cross-examed, picked apart and turned against Dr. J. > > IMO from what I have seen over the past three years at the hyperacusis.net, is that this one individual has had a vendetta against Dr. and is > trying to compete for members from her groups to indoctrinate. He has been hostile and condescending to Dr. J at every turn. STAY AWAY from ROB! > > Rob and the administrator Dan have a different take on misophonia, it may be worth reading about their views over there to get all sides perspective. But I recommend you do not participate, it is not a pleasant experience IMO, although it has worked out well for others here. > > Please do not allow your self to be experimented on public-ally or especially privately, Rob is not qualified to do so, IMO. I have been a trouble maker over there, but I feel that I need to defend this group and have been quite harsh about it. I can't think of what else to do. > > I am sorry if anyone finds my hostility over there, to reflect badly on our group. If so I will tone it down, besides my posts get deleted if I come on to strong anyway. > > maikaefer aka whitenoiserocker > > > > ________________________________ > > To: Soundsensitivity > Sent: Tuesday, September 20, 2011 5:03 AM > Subject: Careful note... > > >  > For those who are perhaps also on the HN board, be extremely diligent in subjecting yourself to any sort of open dialogue about 4S or misophonia there. I cannot recommend the HN as a site for those with anything OTHER than hyperacusis. > > Someone sends these posts directly to one of the fellows there, which cannot be prevented, it is possible he is even a member here, but nonetheless, my experiences there have left me with an extremely cautious and alert attitude, so I am passing this along anyway. > > Use caution when you expose yourself on public internet sites, that is just common sense anywhere in the world, but more of a problem when you are vulnerable. > > With the best for all in mind, > > Dr. J > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 22, 2011 Report Share Posted October 22, 2011 Trish, Your husband is a very lucky man to have such a caring and understanding wife. I hope he appreciates you. Mike To: Soundsensitivity Sent: Saturday, October 22, 2011 7:55 PMSubject: Re: Careful note... I'm so sorry you've had to suffer so long...i can't even imagine how PAINFUL all of that must have been for you. People really do understand here. I do not have 4s but my husband does, its like he's in physical pain all the time from people swallowing, chewing, clicking pens... I feel hopeful lately too...i have to be. I can't imagine the pain my hubby is in but from what i see he is and i'm in pain as well b/c i want to help him so badly. I'm not giving up ...I promise!! Any info we get i'll let ya know. You too now have some support and with that also comes hope Trish>> 09-20-11 Tuesday> I am relieved to hear that I am not crazy…but it’s  being difficult to get people to understand my diagnosis including the medical professionals. I had more hope after this recent media attention, on the NYT and the Today show.> Alone with none to listen two years ago, I went to get an education to have a voice, I registered with the Disability office at bmcc/cuny where was rebuffed and told not to try to take advantage of the people that have a real disability… I struggled to make it, but was it was just to much to handle, I had no choice but withdraw.> I am  incapacitated and broke for most of my 55 years alone with no support from family, community or the system which misdiagnosed and made my life a inferno 20 + years ago after I went to seek treatment for TMJ, Migraine and Hearing problems at the metropolitan hospital, I was sent to a psychiatric ward instead against my will and with none to call for help. Soon after they diagnosed me with a mental disorder. son after I try to commit suicide many times and became homeless, I still suffering the consequences in a NYC SRO where I’ve been sexually assaulted, harassed, bullied, my basic rights ignored by the staff (from director to janitor) at the sro where I live, they enjoy looking at me and blow a bubble, some times trapping me in a corner and popping right into my ears over and over again... If they don’t have a piece of gum in their mouth when they see me they just mimic it to trigger a reaction, they think my pain is funny, I don't see how> people who do it think it's ok. I feel hopeless, lonely, deserving to be punished, but why? Is there any compassion from humans? The director of the SRO where I live chews gum viciously, when i approached  with humility to explain the torture and how severe it He told me that I wasn't going to get my way with Him with mind games and since them everyone else think it's a fair game because they can trigger me to act out and I have none to go to complain, but I suffer in silence with the echo of it in my brain over and over...again every time I step out of my room is a fight and flight situation. I don't want to live like this any more so I have told my Dr. a psychologist that I will kill myselsef by april/2012 if I cannot exit this living nightmare I have to go thru every day in the most dangerous place in NYC. I am hopeless.> I just need someone to understand it, have compassion I am trapped with no hope living in poverty and none that understands to turn.> I hope in this group people may be able to understand me.> mariney> > > > ________________________________> > To: "Soundsensitivity " <Soundsensitivity >> Sent: Tuesday, September 20, 2011 9:11 AM> Subject: Re: Careful note...> > >  > Hi all,> I can say from experience, that I did not find hyperacusis.net forum a friendly place to participate, for me personally with my type of misophonia. > > Although there are many many members at the hyperacusis forum who are really nice and helpful especially for those who also struggle with hyperacusis, they don't seem to be posting currently. So I do not want the negative things going on over there, to be in anyway attributed to those nice members who are staying out of the current debates about misophonia.> > There is one individual, his name is Rob, who I highly advise all to stay away from, unless you like to be cross-examed, picked apart and turned against Dr. J.> > IMO from what I have seen over the past three years at the hyperacusis.net, is that this one individual has had a vendetta against Dr. and is> trying to compete for members from her groups to indoctrinate. He has been hostile and condescending to Dr. J at every turn. STAY AWAY from ROB! > > Rob and the administrator Dan have a different take on misophonia, it may be worth reading about their views over there to get all sides perspective. But I recommend you do not participate, it is not a pleasant experience IMO, although it has worked out well for others here.> > Please do not allow your self to be experimented on public-ally or especially privately, Rob is not qualified to do so, IMO. I have been a trouble maker over there, but I feel that I need to defend this group and have been quite harsh about it. I can't think of what else to do.> > I am sorry if anyone finds my hostility over there, to reflect badly on our group. If so I will tone it down, besides my posts get deleted if I come on to strong anyway.> > maikaefer aka whitenoiserocker> > > > ________________________________> > To: Soundsensitivity > Sent: Tuesday, September 20, 2011 5:03 AM> Subject: Careful note...> > >  > For those who are perhaps also on the HN board, be extremely diligent in subjecting yourself to any sort of open dialogue about 4S or misophonia there. I cannot recommend the HN as a site for those with anything OTHER than hyperacusis.> > Someone sends these posts directly to one of the fellows there, which cannot be prevented, it is possible he is even a member here, but nonetheless, my experiences there have left me with an extremely cautious and alert attitude, so I am passing this along anyway.> > Use caution when you expose yourself on public internet sites, that is just common sense anywhere in the world, but more of a problem when you are vulnerable.> > With the best for all in mind,> > Dr. J> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 22, 2011 Report Share Posted October 22, 2011 Trish, Your husband is a very lucky man to have such a caring and understanding wife. I hope he appreciates you. Mike To: Soundsensitivity Sent: Saturday, October 22, 2011 7:55 PMSubject: Re: Careful note... I'm so sorry you've had to suffer so long...i can't even imagine how PAINFUL all of that must have been for you. People really do understand here. I do not have 4s but my husband does, its like he's in physical pain all the time from people swallowing, chewing, clicking pens... I feel hopeful lately too...i have to be. I can't imagine the pain my hubby is in but from what i see he is and i'm in pain as well b/c i want to help him so badly. I'm not giving up ...I promise!! Any info we get i'll let ya know. You too now have some support and with that also comes hope Trish>> 09-20-11 Tuesday> I am relieved to hear that I am not crazy…but it’s  being difficult to get people to understand my diagnosis including the medical professionals. I had more hope after this recent media attention, on the NYT and the Today show.> Alone with none to listen two years ago, I went to get an education to have a voice, I registered with the Disability office at bmcc/cuny where was rebuffed and told not to try to take advantage of the people that have a real disability… I struggled to make it, but was it was just to much to handle, I had no choice but withdraw.> I am  incapacitated and broke for most of my 55 years alone with no support from family, community or the system which misdiagnosed and made my life a inferno 20 + years ago after I went to seek treatment for TMJ, Migraine and Hearing problems at the metropolitan hospital, I was sent to a psychiatric ward instead against my will and with none to call for help. Soon after they diagnosed me with a mental disorder. son after I try to commit suicide many times and became homeless, I still suffering the consequences in a NYC SRO where I’ve been sexually assaulted, harassed, bullied, my basic rights ignored by the staff (from director to janitor) at the sro where I live, they enjoy looking at me and blow a bubble, some times trapping me in a corner and popping right into my ears over and over again... If they don’t have a piece of gum in their mouth when they see me they just mimic it to trigger a reaction, they think my pain is funny, I don't see how> people who do it think it's ok. I feel hopeless, lonely, deserving to be punished, but why? Is there any compassion from humans? The director of the SRO where I live chews gum viciously, when i approached  with humility to explain the torture and how severe it He told me that I wasn't going to get my way with Him with mind games and since them everyone else think it's a fair game because they can trigger me to act out and I have none to go to complain, but I suffer in silence with the echo of it in my brain over and over...again every time I step out of my room is a fight and flight situation. I don't want to live like this any more so I have told my Dr. a psychologist that I will kill myselsef by april/2012 if I cannot exit this living nightmare I have to go thru every day in the most dangerous place in NYC. I am hopeless.> I just need someone to understand it, have compassion I am trapped with no hope living in poverty and none that understands to turn.> I hope in this group people may be able to understand me.> mariney> > > > ________________________________> > To: "Soundsensitivity " <Soundsensitivity >> Sent: Tuesday, September 20, 2011 9:11 AM> Subject: Re: Careful note...> > >  > Hi all,> I can say from experience, that I did not find hyperacusis.net forum a friendly place to participate, for me personally with my type of misophonia. > > Although there are many many members at the hyperacusis forum who are really nice and helpful especially for those who also struggle with hyperacusis, they don't seem to be posting currently. So I do not want the negative things going on over there, to be in anyway attributed to those nice members who are staying out of the current debates about misophonia.> > There is one individual, his name is Rob, who I highly advise all to stay away from, unless you like to be cross-examed, picked apart and turned against Dr. J.> > IMO from what I have seen over the past three years at the hyperacusis.net, is that this one individual has had a vendetta against Dr. and is> trying to compete for members from her groups to indoctrinate. He has been hostile and condescending to Dr. J at every turn. STAY AWAY from ROB! > > Rob and the administrator Dan have a different take on misophonia, it may be worth reading about their views over there to get all sides perspective. But I recommend you do not participate, it is not a pleasant experience IMO, although it has worked out well for others here.> > Please do not allow your self to be experimented on public-ally or especially privately, Rob is not qualified to do so, IMO. I have been a trouble maker over there, but I feel that I need to defend this group and have been quite harsh about it. I can't think of what else to do.> > I am sorry if anyone finds my hostility over there, to reflect badly on our group. If so I will tone it down, besides my posts get deleted if I come on to strong anyway.> > maikaefer aka whitenoiserocker> > > > ________________________________> > To: Soundsensitivity > Sent: Tuesday, September 20, 2011 5:03 AM> Subject: Careful note...> > >  > For those who are perhaps also on the HN board, be extremely diligent in subjecting yourself to any sort of open dialogue about 4S or misophonia there. I cannot recommend the HN as a site for those with anything OTHER than hyperacusis.> > Someone sends these posts directly to one of the fellows there, which cannot be prevented, it is possible he is even a member here, but nonetheless, my experiences there have left me with an extremely cautious and alert attitude, so I am passing this along anyway.> > Use caution when you expose yourself on public internet sites, that is just common sense anywhere in the world, but more of a problem when you are vulnerable.> > With the best for all in mind,> > Dr. J> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 22, 2011 Report Share Posted October 22, 2011 Trish, Your husband is a very lucky man to have such a caring and understanding wife. I hope he appreciates you. Mike To: Soundsensitivity Sent: Saturday, October 22, 2011 7:55 PMSubject: Re: Careful note... I'm so sorry you've had to suffer so long...i can't even imagine how PAINFUL all of that must have been for you. People really do understand here. I do not have 4s but my husband does, its like he's in physical pain all the time from people swallowing, chewing, clicking pens... I feel hopeful lately too...i have to be. I can't imagine the pain my hubby is in but from what i see he is and i'm in pain as well b/c i want to help him so badly. I'm not giving up ...I promise!! Any info we get i'll let ya know. You too now have some support and with that also comes hope Trish>> 09-20-11 Tuesday> I am relieved to hear that I am not crazy…but it’s  being difficult to get people to understand my diagnosis including the medical professionals. I had more hope after this recent media attention, on the NYT and the Today show.> Alone with none to listen two years ago, I went to get an education to have a voice, I registered with the Disability office at bmcc/cuny where was rebuffed and told not to try to take advantage of the people that have a real disability… I struggled to make it, but was it was just to much to handle, I had no choice but withdraw.> I am  incapacitated and broke for most of my 55 years alone with no support from family, community or the system which misdiagnosed and made my life a inferno 20 + years ago after I went to seek treatment for TMJ, Migraine and Hearing problems at the metropolitan hospital, I was sent to a psychiatric ward instead against my will and with none to call for help. Soon after they diagnosed me with a mental disorder. son after I try to commit suicide many times and became homeless, I still suffering the consequences in a NYC SRO where I’ve been sexually assaulted, harassed, bullied, my basic rights ignored by the staff (from director to janitor) at the sro where I live, they enjoy looking at me and blow a bubble, some times trapping me in a corner and popping right into my ears over and over again... If they don’t have a piece of gum in their mouth when they see me they just mimic it to trigger a reaction, they think my pain is funny, I don't see how> people who do it think it's ok. I feel hopeless, lonely, deserving to be punished, but why? Is there any compassion from humans? The director of the SRO where I live chews gum viciously, when i approached  with humility to explain the torture and how severe it He told me that I wasn't going to get my way with Him with mind games and since them everyone else think it's a fair game because they can trigger me to act out and I have none to go to complain, but I suffer in silence with the echo of it in my brain over and over...again every time I step out of my room is a fight and flight situation. I don't want to live like this any more so I have told my Dr. a psychologist that I will kill myselsef by april/2012 if I cannot exit this living nightmare I have to go thru every day in the most dangerous place in NYC. I am hopeless.> I just need someone to understand it, have compassion I am trapped with no hope living in poverty and none that understands to turn.> I hope in this group people may be able to understand me.> mariney> > > > ________________________________> > To: "Soundsensitivity " <Soundsensitivity >> Sent: Tuesday, September 20, 2011 9:11 AM> Subject: Re: Careful note...> > >  > Hi all,> I can say from experience, that I did not find hyperacusis.net forum a friendly place to participate, for me personally with my type of misophonia. > > Although there are many many members at the hyperacusis forum who are really nice and helpful especially for those who also struggle with hyperacusis, they don't seem to be posting currently. So I do not want the negative things going on over there, to be in anyway attributed to those nice members who are staying out of the current debates about misophonia.> > There is one individual, his name is Rob, who I highly advise all to stay away from, unless you like to be cross-examed, picked apart and turned against Dr. J.> > IMO from what I have seen over the past three years at the hyperacusis.net, is that this one individual has had a vendetta against Dr. and is> trying to compete for members from her groups to indoctrinate. He has been hostile and condescending to Dr. J at every turn. STAY AWAY from ROB! > > Rob and the administrator Dan have a different take on misophonia, it may be worth reading about their views over there to get all sides perspective. But I recommend you do not participate, it is not a pleasant experience IMO, although it has worked out well for others here.> > Please do not allow your self to be experimented on public-ally or especially privately, Rob is not qualified to do so, IMO. I have been a trouble maker over there, but I feel that I need to defend this group and have been quite harsh about it. I can't think of what else to do.> > I am sorry if anyone finds my hostility over there, to reflect badly on our group. If so I will tone it down, besides my posts get deleted if I come on to strong anyway.> > maikaefer aka whitenoiserocker> > > > ________________________________> > To: Soundsensitivity > Sent: Tuesday, September 20, 2011 5:03 AM> Subject: Careful note...> > >  > For those who are perhaps also on the HN board, be extremely diligent in subjecting yourself to any sort of open dialogue about 4S or misophonia there. I cannot recommend the HN as a site for those with anything OTHER than hyperacusis.> > Someone sends these posts directly to one of the fellows there, which cannot be prevented, it is possible he is even a member here, but nonetheless, my experiences there have left me with an extremely cautious and alert attitude, so I am passing this along anyway.> > Use caution when you expose yourself on public internet sites, that is just common sense anywhere in the world, but more of a problem when you are vulnerable.> > With the best for all in mind,> > Dr. J> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 23, 2011 Report Share Posted October 23, 2011 Mariney: I read your post from 9-20-11 I know you said you are in a very bad way financially, but in case you have some medical insurance of some sort I wanted to post this information from you. It's 2 doctors that can help you with the 4S in your area. The best of luck to you - you are in my thoughts & prayers. EAST COAST USA Dhyan Cassie, AuD Tinnitus/Hyperacusis Treatment Center Ear, Nose & Throat Professionals 209 Taunton Road MEDFORD, NJ 080553419 Phone: (856)983-8981 Herzfeld, Au.D. Hearing and Tinnitus Center 173 Froehlich Farm Blvd Woodbury, NY 11797 www.earminder.com > > 09-20-11 Tuesday > I am relieved to hear that I am not crazy…but it’s  being difficult to get people to understand my diagnosis including the medical professionals. I had more hope after this recent media attention, on the NYT and the Today show. > Alone with none to listen two years ago, I went to get an education to have a voice, I registered with the Disability office at bmcc/cuny where was rebuffed and told not to try to take advantage of the people that have a real disability… I struggled to make it, but was it was just to much to handle, I had no choice but withdraw. > I am  incapacitated and broke for most of my 55 years alone with no support from family, community or the system which misdiagnosed and made my life a inferno 20 + years ago after I went to seek treatment for TMJ, Migraine and Hearing problems at the metropolitan hospital, I was sent to a psychiatric ward instead against my will and with none to call for help. Soon after they diagnosed me with a mental disorder. son after I try to commit suicide many times and became homeless, I still suffering the consequences in a NYC SRO where I’ve been sexually assaulted, harassed, bullied, my basic rights ignored by the staff (from director to janitor) at the sro where I live, they enjoy looking at me and blow a bubble, some times trapping me in a corner and popping right into my ears over and over again... If they don’t have a piece of gum in their mouth when they see me they just mimic it to trigger a reaction, they think my pain is funny, I don't see how > people who do it think it's ok. I feel hopeless, lonely, deserving to be punished, but why? Is there any compassion from humans? The director of the SRO where I live chews gum viciously, when i approached  with humility to explain the torture and how severe it He told me that I wasn't going to get my way with Him with mind games and since them everyone else think it's a fair game because they can trigger me to act out and I have none to go to complain, but I suffer in silence with the echo of it in my brain over and over...again every time I step out of my room is a fight and flight situation. I don't want to live like this any more so I have told my Dr. a psychologist that I will kill myselsef by april/2012 if I cannot exit this living nightmare I have to go thru every day in the most dangerous place in NYC. I am hopeless. > I just need someone to understand it, have compassion I am trapped with no hope living in poverty and none that understands to turn. > I hope in this group people may be able to understand me. > mariney > > > > ________________________________ > > To: " Soundsensitivity " <Soundsensitivity > > Sent: Tuesday, September 20, 2011 9:11 AM > Subject: Re: Careful note... > > >  > Hi all, > I can say from experience, that I did not find hyperacusis.net forum a friendly place to participate, for me personally with my type of misophonia. > > Although there are many many members at the hyperacusis forum who are really nice and helpful especially for those who also struggle with hyperacusis, they don't seem to be posting currently. So I do not want the negative things going on over there, to be in anyway attributed to those nice members who are staying out of the current debates about misophonia. > > There is one individual, his name is Rob, who I highly advise all to stay away from, unless you like to be cross-examed, picked apart and turned against Dr. J. > > IMO from what I have seen over the past three years at the hyperacusis.net, is that this one individual has had a vendetta against Dr. and is > trying to compete for members from her groups to indoctrinate. He has been hostile and condescending to Dr. J at every turn. STAY AWAY from ROB! > > Rob and the administrator Dan have a different take on misophonia, it may be worth reading about their views over there to get all sides perspective. But I recommend you do not participate, it is not a pleasant experience IMO, although it has worked out well for others here. > > Please do not allow your self to be experimented on public-ally or especially privately, Rob is not qualified to do so, IMO. I have been a trouble maker over there, but I feel that I need to defend this group and have been quite harsh about it. I can't think of what else to do. > > I am sorry if anyone finds my hostility over there, to reflect badly on our group. If so I will tone it down, besides my posts get deleted if I come on to strong anyway. > > maikaefer aka whitenoiserocker > > > > ________________________________ > > To: Soundsensitivity > Sent: Tuesday, September 20, 2011 5:03 AM > Subject: Careful note... > > >  > For those who are perhaps also on the HN board, be extremely diligent in subjecting yourself to any sort of open dialogue about 4S or misophonia there. I cannot recommend the HN as a site for those with anything OTHER than hyperacusis. > > Someone sends these posts directly to one of the fellows there, which cannot be prevented, it is possible he is even a member here, but nonetheless, my experiences there have left me with an extremely cautious and alert attitude, so I am passing this along anyway. > > Use caution when you expose yourself on public internet sites, that is just common sense anywhere in the world, but more of a problem when you are vulnerable. > > With the best for all in mind, > > Dr. J > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 23, 2011 Report Share Posted October 23, 2011 Trish its so refreshing that some spouses not only understand but are definite allies in their husband/wife's fight against this. Wish I had been so lucky To: Soundsensitivity Sent: Saturday, October 22, 2011 10:55 PMSubject: Re: Careful note... I'm so sorry you've had to suffer so long...i can't even imagine how PAINFUL all of that must have been for you. People really do understand here. I do not have 4s but my husband does, its like he's in physical pain all the time from people swallowing, chewing, clicking pens... I feel hopeful lately too...i have to be. I can't imagine the pain my hubby is in but from what i see he is and i'm in pain as well b/c i want to help him so badly. I'm not giving up ...I promise!! Any info we get i'll let ya know. You too now have some support and with that also comes hope Trish > > 09-20-11 Tuesday > I am relieved to hear that I am not crazy…but it’s  being difficult to get people to understand my diagnosis including the medical professionals. I had more hope after this recent media attention, on the NYT and the Today show. > Alone with none to listen two years ago, I went to get an education to have a voice, I registered with the Disability office at bmcc/cuny where was rebuffed and told not to try to take advantage of the people that have a real disability… I struggled to make it, but was it was just to much to handle, I had no choice but withdraw. > I am  incapacitated and broke for most of my 55 years alone with no support from family, community or the system which misdiagnosed and made my life a inferno 20 + years ago after I went to seek treatment for TMJ, Migraine and Hearing problems at the metropolitan hospital, I was sent to a psychiatric ward instead against my will and with none to call for help. Soon after they diagnosed me with a mental disorder. son after I try to commit suicide many times and became homeless, I still suffering the consequences in a NYC SRO where I’ve been sexually assaulted, harassed, bullied, my basic rights ignored by the staff (from director to janitor) at the sro where I live, they enjoy looking at me and blow a bubble, some times trapping me in a corner and popping right into my ears over and over again... If they don’t have a piece of gum in their mouth when they see me they just mimic it to trigger a reaction, they think my pain is funny, I don't see how > people who do it think it's ok. I feel hopeless, lonely, deserving to be punished, but why? Is there any compassion from humans? The director of the SRO where I live chews gum viciously, when i approached  with humility to explain the torture and how severe it He told me that I wasn't going to get my way with Him with mind games and since them everyone else think it's a fair game because they can trigger me to act out and I have none to go to complain, but I suffer in silence with the echo of it in my brain over and over...again every time I step out of my room is a fight and flight situation. I don't want to live like this any more so I have told my Dr. a psychologist that I will kill myselsef by april/2012 if I cannot exit this living nightmare I have to go thru every day in the most dangerous place in NYC. I am hopeless. > I just need someone to understand it, have compassion I am trapped with no hope living in poverty and none that understands to turn. > I hope in this group people may be able to understand me. > mariney > > > > ________________________________ > > To: "Soundsensitivity " <Soundsensitivity > > Sent: Tuesday, September 20, 2011 9:11 AM > Subject: Re: Careful note... > > >  > Hi all, > I can say from experience, that I did not find hyperacusis.net forum a friendly place to participate, for me personally with my type of misophonia. > > Although there are many many members at the hyperacusis forum who are really nice and helpful especially for those who also struggle with hyperacusis, they don't seem to be posting currently. So I do not want the negative things going on over there, to be in anyway attributed to those nice members who are staying out of the current debates about misophonia. > > There is one individual, his name is Rob, who I highly advise all to stay away from, unless you like to be cross-examed, picked apart and turned against Dr. J. > > IMO from what I have seen over the past three years at the hyperacusis.net, is that this one individual has had a vendetta against Dr. and is > trying to compete for members from her groups to indoctrinate. He has been hostile and condescending to Dr. J at every turn. STAY AWAY from ROB! > > Rob and the administrator Dan have a different take on misophonia, it may be worth reading about their views over there to get all sides perspective. But I recommend you do not participate, it is not a pleasant experience IMO, although it has worked out well for others here. > > Please do not allow your self to be experimented on public-ally or especially privately, Rob is not qualified to do so, IMO. I have been a trouble maker over there, but I feel that I need to defend this group and have been quite harsh about it. I can't think of what else to do. > > I am sorry if anyone finds my hostility over there, to reflect badly on our group. If so I will tone it down, besides my posts get deleted if I come on to strong anyway. > > maikaefer aka whitenoiserocker > > > > ________________________________ > > To: Soundsensitivity > Sent: Tuesday, September 20, 2011 5:03 AM > Subject: Careful note... > > >  > For those who are perhaps also on the HN board, be extremely diligent in subjecting yourself to any sort of open dialogue about 4S or misophonia there. I cannot recommend the HN as a site for those with anything OTHER than hyperacusis. > > Someone sends these posts directly to one of the fellows there, which cannot be prevented, it is possible he is even a member here, but nonetheless, my experiences there have left me with an extremely cautious and alert attitude, so I am passing this along anyway. > > Use caution when you expose yourself on public internet sites, that is just common sense anywhere in the world, but more of a problem when you are vulnerable. > > With the best for all in mind, > > Dr. J > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 23, 2011 Report Share Posted October 23, 2011 Thank you for being this understanding. You give the rest of us hope, that we do not indeed have to 'grow thicker skin' when it comes to our significant others and accept and live the negative reaction it may trigger in them. You're a gem, Trish > > > > 09-20-11 Tuesday > > I am relieved to hear that I am not crazy…but it’s  being difficult to get people to understand my diagnosis including the medical professionals. I had more hope after this recent media attention, on the NYT and the Today show. > > Alone with none to listen two years ago, I went to get an education to have a voice, I registered with the Disability office at bmcc/cuny where was rebuffed and told not to try to take advantage of the people that have a real disability… I struggled to make it, but was it was just to much to handle, I had no choice but withdraw. > > I am  incapacitated and broke for most of my 55 years alone with no support from family, community or the system which misdiagnosed and made my life a inferno 20 + years ago after I went to seek treatment for TMJ, Migraine and Hearing problems at the metropolitan hospital, I was sent to a psychiatric ward instead against my will and with none to call for help. Soon after they diagnosed me with a mental disorder. son after I try to commit suicide many times and became homeless, I still suffering the consequences in a NYC SRO where I’ve been sexually assaulted, harassed, bullied, my basic rights ignored by the staff (from director to janitor) at the sro where I live, they enjoy looking at me and blow a bubble, some times trapping me in a corner and popping right into my ears over and over again... If they don’t have a piece of gum in their mouth when they see me they just mimic it to trigger a reaction, they think my pain is funny, I > don't see how > > people who do it think it's ok. I feel hopeless, lonely, deserving to be punished, but why? Is there any compassion from humans? The director of the SRO where I live chews gum viciously, when i approached  with humility to explain the torture and how severe it He told me that I wasn't going to get my way with Him with mind games and since them everyone else think it's a fair game because they can trigger me to act out and I have none to go to complain, but I suffer in silence with the echo of it in my brain over and over...again every time I step out of my room is a fight and flight situation. I don't want to live like this any more so I have told my Dr. a psychologist that I will kill myselsef by april/2012 if I cannot exit this living nightmare I have to go thru every day in the most dangerous place in NYC. I am hopeless. > > I just need someone to understand it, have compassion I am trapped with no hope living in poverty and none that understands to turn. > > I hope in this group people may be able to understand me. > > mariney > > > > > > > > ________________________________ > > From: maikaefer <maikaefer38@> > > To: " Soundsensitivity " <Soundsensitivity > > > Sent: Tuesday, September 20, 2011 9:11 AM > > Subject: Re: Careful note... > > > > > >  > > Hi all, > > I can say from experience, that I did not find hyperacusis.net forum a friendly place to participate, for me personally with my type of misophonia. > > > > Although there are many many members at the hyperacusis forum who are really nice and helpful especially for those who also struggle with hyperacusis, they don't seem to be posting currently. So I do not want the negative things going on over there, to be in anyway attributed to those nice members who are staying out of the current debates about misophonia. > > > > There is one individual, his name is Rob, who I highly advise all to stay away from, unless you like to be cross-examed, picked apart and turned against Dr. J. > > > > IMO from what I have seen over the past three years at the hyperacusis.net, is that this one individual has had a vendetta against Dr. and is > > trying to compete for members from her groups to indoctrinate. He has been hostile and condescending to Dr. J at every turn. STAY AWAY from ROB! > > > > Rob and the administrator Dan have a different take on misophonia, it may be worth reading about their views over there to get all sides perspective. But I recommend you do not participate, it is not a pleasant experience IMO, although it has worked out well for others here. > > > > Please do not allow your self to be experimented on public-ally or especially privately, Rob is not qualified to do so, IMO. I have been a trouble maker over there, but I feel that I need to defend this group and have been quite harsh about it. I can't think of what else to do. > > > > I am sorry if anyone finds my hostility over there, to reflect badly on our group. If so I will tone it down, besides my posts get deleted if I come on to strong anyway. > > > > maikaefer aka whitenoiserocker > > > > > > > > ________________________________ > > From: M <Oregon7@> > > To: Soundsensitivity > > Sent: Tuesday, September 20, 2011 5:03 AM > > Subject: Careful note... > > > > > >  > > For those who are perhaps also on the HN board, be extremely diligent in subjecting yourself to any sort of open dialogue about 4S or misophonia there. I cannot recommend the HN as a site for those with anything OTHER than hyperacusis. > > > > Someone sends these posts directly to one of the fellows there, which cannot be prevented, it is possible he is even a member here, but nonetheless, my experiences there have left me with an extremely cautious and alert attitude, so I am passing this along anyway. > > > > Use caution when you expose yourself on public internet sites, that is just common sense anywhere in the world, but more of a problem when you are vulnerable. > > > > With the best for all in mind, > > > > Dr. J > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 27, 2011 Report Share Posted October 27, 2011 I have no hope, the doctors do not take medicare or madicaid... only cash which is a $200.00 consultation fee for the 40 minute visit.thanks any wayTo: Soundsensitivity Sent: Sunday, October 23, 2011 8:51 AMSubject: Re: Careful note... Mariney: I read your post from 9-20-11 I know you said you are in a very bad way financially, but in case you have some medical insurance of some sort I wanted to post this information from you. It's 2 doctors that can help you with the 4S in your area. The best of luck to you - you are in my thoughts & prayers. EAST COAST USA Dhyan Cassie, AuD Tinnitus/Hyperacusis Treatment Center Ear, Nose & Throat Professionals 209 Taunton Road MEDFORD, NJ 080553419 Phone: (856)983-8981 Herzfeld, Au.D. Hearing and Tinnitus Center 173 Froehlich Farm Blvd Woodbury, NY 11797 www.earminder.com > > 09-20-11 Tuesday > I am relieved to hear that I am not crazy…but it’s  being difficult to get people to understand my diagnosis including the medical professionals. I had more hope after this recent media attention, on the NYT and the Today show. > Alone with none to listen two years ago, I went to get an education to have a voice, I registered with the Disability office at bmcc/cuny where was rebuffed and told not to try to take advantage of the people that have a real disability… I struggled to make it, but was it was just to much to handle, I had no choice but withdraw. > I am  incapacitated and broke for most of my 55 years alone with no support from family, community or the system which misdiagnosed and made my life a inferno 20 + years ago after I went to seek treatment for TMJ, Migraine and Hearing problems at the metropolitan hospital, I was sent to a psychiatric ward instead against my will and with none to call for help. Soon after they diagnosed me with a mental disorder. son after I try to commit suicide many times and became homeless, I still suffering the consequences in a NYC SRO where I’ve been sexually assaulted, harassed, bullied, my basic rights ignored by the staff (from director to janitor) at the sro where I live, they enjoy looking at me and blow a bubble, some times trapping me in a corner and popping right into my ears over and over again... If they don’t have a piece of gum in their mouth when they see me they just mimic it to trigger a reaction, they think my pain is funny, I don't see how > people who do it think it's ok. I feel hopeless, lonely, deserving to be punished, but why? Is there any compassion from humans? The director of the SRO where I live chews gum viciously, when i approached  with humility to explain the torture and how severe it He told me that I wasn't going to get my way with Him with mind games and since them everyone else think it's a fair game because they can trigger me to act out and I have none to go to complain, but I suffer in silence with the echo of it in my brain over and over...again every time I step out of my room is a fight and flight situation. I don't want to live like this any more so I have told my Dr. a psychologist that I will kill myselsef by april/2012 if I cannot exit this living nightmare I have to go thru every day in the most dangerous place in NYC. I am hopeless. > I just need someone to understand it, have compassion I am trapped with no hope living in poverty and none that understands to turn. > I hope in this group people may be able to understand me. > mariney > > > > ________________________________ > > To: "Soundsensitivity " <Soundsensitivity > > Sent: Tuesday, September 20, 2011 9:11 AM > Subject: Re: Careful note... > > >  > Hi all, > I can say from experience, that I did not find hyperacusis.net forum a friendly place to participate, for me personally with my type of misophonia. > > Although there are many many members at the hyperacusis forum who are really nice and helpful especially for those who also struggle with hyperacusis, they don't seem to be posting currently. So I do not want the negative things going on over there, to be in anyway attributed to those nice members who are staying out of the current debates about misophonia. > > There is one individual, his name is Rob, who I highly advise all to stay away from, unless you like to be cross-examed, picked apart and turned against Dr. J. > > IMO from what I have seen over the past three years at the hyperacusis.net, is that this one individual has had a vendetta against Dr. and is > trying to compete for members from her groups to indoctrinate. He has been hostile and condescending to Dr. J at every turn. STAY AWAY from ROB! > > Rob and the administrator Dan have a different take on misophonia, it may be worth reading about their views over there to get all sides perspective. But I recommend you do not participate, it is not a pleasant experience IMO, although it has worked out well for others here. > > Please do not allow your self to be experimented on public-ally or especially privately, Rob is not qualified to do so, IMO. I have been a trouble maker over there, but I feel that I need to defend this group and have been quite harsh about it. I can't think of what else to do. > > I am sorry if anyone finds my hostility over there, to reflect badly on our group. If so I will tone it down, besides my posts get deleted if I come on to strong anyway. > > maikaefer aka whitenoiserocker > > > > ________________________________ > > To: Soundsensitivity > Sent: Tuesday, September 20, 2011 5:03 AM > Subject: Careful note... > > >  > For those who are perhaps also on the HN board, be extremely diligent in subjecting yourself to any sort of open dialogue about 4S or misophonia there. I cannot recommend the HN as a site for those with anything OTHER than hyperacusis. > > Someone sends these posts directly to one of the fellows there, which cannot be prevented, it is possible he is even a member here, but nonetheless, my experiences there have left me with an extremely cautious and alert attitude, so I am passing this along anyway. > > Use caution when you expose yourself on public internet sites, that is just common sense anywhere in the world, but more of a problem when you are vulnerable. > > With the best for all in mind, > > Dr. J > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 27, 2011 Report Share Posted October 27, 2011 http://whitenoisemp3s.com/free-white-noiseFrom: maikaefer To: "Soundsensitivity " <Soundsensitivity >Sent: Thursday, October 27, 2011 7:59 PMSubject: Re: Re: Careful note... If you can get a hold of an inexpensive mp3 player with headphones (earbuds preferably) and download a mp3 file to it, http://whitenoisemp3s.com/free-white-noise this would work similar to the wearable sound generators you would get from the audiologist. It helps me, I can't afford to see an audiologist right now either.To: "Soundsensitivity " <Soundsensitivity >Sent: Thursday, October 27, 2011 11:12 AMSubject: Re: Re: Careful note... I have no hope, the doctors do not take medicare or madicaid... only cash which is a $200.00 consultation fee for the 40 minute visit.thanks any wayTo: Soundsensitivity Sent: Sunday, October 23, 2011 8:51 AMSubject: Re: Careful note... Mariney: I read your post from 9-20-11 I know you said you are in a very bad way financially, but in case you have some medical insurance of some sort I wanted to post this information from you. It's 2 doctors that can help you with the 4S in your area. The best of luck to you - you are in my thoughts & prayers. EAST COAST USA Dhyan Cassie, AuD Tinnitus/Hyperacusis Treatment Center Ear, Nose & Throat Professionals 209 Taunton Road MEDFORD, NJ 080553419 Phone: (856)983-8981 Herzfeld, Au.D. Hearing and Tinnitus Center 173 Froehlich Farm Blvd Woodbury, NY 11797 www.earminder.com > > 09-20-11 Tuesday > I am relieved to hear that I am not crazy…but it’s  being difficult to get people to understand my diagnosis including the medical professionals. I had more hope after this recent media attention, on the NYT and the Today show. > Alone with none to listen two years ago, I went to get an education to have a voice, I registered with the Disability office at bmcc/cuny where was rebuffed and told not to try to take advantage of the people that have a real disability… I struggled to make it, but was it was just to much to handle, I had no choice but withdraw. > I am  incapacitated and broke for most of my 55 years alone with no support from family, community or the system which misdiagnosed and made my life a inferno 20 + years ago after I went to seek treatment for TMJ, Migraine and Hearing problems at the metropolitan hospital, I was sent to a psychiatric ward instead against my will and with none to call for help. Soon after they diagnosed me with a mental disorder. son after I try to commit suicide many times and became homeless, I still suffering the consequences in a NYC SRO where I’ve been sexually assaulted, harassed, bullied, my basic rights ignored by the staff (from director to janitor) at the sro where I live, they enjoy looking at me and blow a bubble, some times trapping me in a corner and popping right into my ears over and over again... If they don’t have a piece of gum in their mouth when they see me they just mimic it to trigger a reaction, they think my pain is funny, I don't see how > people who do it think it's ok. I feel hopeless, lonely, deserving to be punished, but why? Is there any compassion from humans? The director of the SRO where I live chews gum viciously, when i approached  with humility to explain the torture and how severe it He told me that I wasn't going to get my way with Him with mind games and since them everyone else think it's a fair game because they can trigger me to act out and I have none to go to complain, but I suffer in silence with the echo of it in my brain over and over...again every time I step out of my room is a fight and flight situation. I don't want to live like this any more so I have told my Dr. a psychologist that I will kill myselsef by april/2012 if I cannot exit this living nightmare I have to go thru every day in the most dangerous place in NYC. I am hopeless. > I just need someone to understand it, have compassion I am trapped with no hope living in poverty and none that understands to turn. > I hope in this group people may be able to understand me. > mariney > > > > ________________________________ > > To: "Soundsensitivity " <Soundsensitivity > > Sent: Tuesday, September 20, 2011 9:11 AM > Subject: Re: Careful note... > > >  > Hi all, > I can say from experience, that I did not find hyperacusis.net forum a friendly place to participate, for me personally with my type of misophonia. > > Although there are many many members at the hyperacusis forum who are really nice and helpful especially for those who also struggle with hyperacusis, they don't seem to be posting currently. So I do not want the negative things going on over there, to be in anyway attributed to those nice members who are staying out of the current debates about misophonia. > > There is one individual, his name is Rob, who I highly advise all to stay away from, unless you like to be cross-examed, picked apart and turned against Dr. J. > > IMO from what I have seen over the past three years at the hyperacusis.net, is that this one individual has had a vendetta against Dr. and is > trying to compete for members from her groups to indoctrinate. He has been hostile and condescending to Dr. J at every turn. STAY AWAY from ROB! > > Rob and the administrator Dan have a different take on misophonia, it may be worth reading about their views over there to get all sides perspective. But I recommend you do not participate, it is not a pleasant experience IMO, although it has worked out well for others here. > > Please do not allow your self to be experimented on public-ally or especially privately, Rob is not qualified to do so, IMO. I have been a trouble maker over there, but I feel that I need to defend this group and have been quite harsh about it. I can't think of what else to do. > > I am sorry if anyone finds my hostility over there, to reflect badly on our group. If so I will tone it down, besides my posts get deleted if I come on to strong anyway. > > maikaefer aka whitenoiserocker > > > > ________________________________ > > To: Soundsensitivity > Sent: Tuesday, September 20, 2011 5:03 AM > Subject: Careful note... > > >  > For those who are perhaps also on the HN board, be extremely diligent in subjecting yourself to any sort of open dialogue about 4S or misophonia there. I cannot recommend the HN as a site for those with anything OTHER than hyperacusis. > > Someone sends these posts directly to one of the fellows there, which cannot be prevented, it is possible he is even a member here, but nonetheless, my experiences there have left me with an extremely cautious and alert attitude, so I am passing this along anyway. > > Use caution when you expose yourself on public internet sites, that is just common sense anywhere in the world, but more of a problem when you are vulnerable. > > With the best for all in mind, > > Dr. J > Quote Link to comment Share on other sites More sharing options...
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