Guest guest Posted December 8, 2011 Report Share Posted December 8, 2011 , Are you an Audiologist or ENT?? To: Soundsensitivity Sent: Thursday, December 8, 2011 1:14 PMSubject: Re: Where to start? Thank you very much for the extra information, which I think confirms an otological cause. Grommets in the eardrum allow air to enter the middle ear, so that no more fluid collects in there. Sometimes these can over-aerate the ME, so that the mucous membrane dries out and dehydrates, predisposing to low inner ear pressure and a hyperactive cochlea. Otologists may disagree with this proposed mechanism, but certainly some children become audiosensitive after grommet insertion. Although I have not seen this myself, it is now reported that a late consequence in young women is Patulous Eustachian Tube (see Wikipedia), again probably a long-term result of dehydration. I sugest you specifically ask the doctor to check for PET. One sign is chalk patches on the eardrum (tympanosclerosis), due I also suspect to over-aeration of the eardrum. There should be enough info on the web for you two to work out if your daughter has PET. If so, be prepared, in fact well-prepared, as many doctors will be dismissive. **********************************************************************> > >> > > I am very concerned about how upset my 11 year old daughter is getting...more so each day, it seems...with her sensitivity to sounds. It pains me to see her cry, wondering why she has to feel this way. I can only offer suggestions, but because it's so new to her, and she's so young, I know, to her, it seems hopeless right now. Can any of you offer me advice about where to start with getting her help outside of our home? Do we talk to her regular doctor initially? I'm just not sure where to begin Thank you all.> > >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 9, 2011 Report Share Posted December 9, 2011 There isn't enough research done (if any) on this disorder in the medical field by the doctors that specialize in treating this disorder. I am continuing to write to the clinical trial department in hopes that they will realize that this disorder is very real and we need some answers. I have also written to one of the local medical universities who participates in research and is apart of the clinical trial organization. I have also written to my local newspaper. I haven't gotten any responses and not sure if i ever will, but i can't sit and do nothing about it anymore. If anyone has any other suggestions, we need to raise our voices and really make this condition known to people who don't suffer from it so we can get treatment and relief from this horrendous condition. To: Soundsensitivity Sent: Friday, December 9, 2011 2:36 PM Subject: Re: Where to start? I must agree with Greg Z in that this is NOT an auditory disorder. It is a neurological disorder. Our brains improperly process repetetive stimuli (aural and/or visual). The only thing this has to do with audiology is that the sounds come in through our ears. Do we need to get an opthamologist on board to find the connection that we have with visual stimuli? Our symptoms are too freakishly exact to have this be a vestibular or any type of oto-ear-related issue. In addition to psych counseling to ward off secondary issues like isolation and to alleviate stress, I urge all of us to keep talking to neurologists/neuroscientists until someone can find out what's happening in our brains. Welcome to our newcomers. You are not alone. Together we can do this. > > I've suffered from an irrational rage response to the sound of people > eating, chewing gum, slurping coffee, etc. for about 25 years. Only > two days ago did I find (via Google) that I am not alone. What an > amazing discovery? This is real! > > But I do not know where to start in dealing with this and, ideally > finding treatment. I clearly suffer from SSSS (based upon what I have > read online) but I don't really know where to go from here. > > Any suggestions? > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 9, 2011 Report Share Posted December 9, 2011 , what is "social scripting?" To: Soundsensitivity Sent: Fri, December 9, 2011 10:18:16 AMSubject: Re: Re: Where to start? All I can say as to others/familiy moderating their own behavior/noises we leave that up to the person as to how hard they want to try and accomodate my daughter's noise sensitivity. Beyond that, my daughter has to be the one to leave a situation if there are noises she cannot tolerate. If she wants to stay in a situation bad enough, she has leaned that with earplugs and/or her headphones and IPod she can conciously make an effort to ignore the noises or to conciously do calming exercises like deep breathing, or really do what's called "social scripting" in her head....talking herself through the situation can help her not be so reactive. Then in the end if someone is coughing repeatedly...which is her primary trigger...she will end up needing to leave the room anyone despite her best efforts. But I will not allow her to remain in a situation where I know it is likely that she will act out aggressively. So, that is our life everyday....but we have learned to live with it for the most part. Subject: Re: Where to start?To: Soundsensitivity Date: Thursday, December 8, 2011, 8:02 AM , that does sound like quite a challenge. We have not experienced having to leave public places. I've read that many of you are dealing with this. The movie theater appears to be a common issue. My daughter's complaints, right now, are most associated with her dad and her younger sister. I don't know if it's because of how I handle the situation when she might ask me to throw out my gum, or not clink my spoon in my bowl...I don't get as frustrated with her as they do. But they're getting better I must say. It's definitely not an easy adaptation for anyone in our home. She is getting new headphones for Christmas, however We'll travel this path the best we can! Thank you all.> > > >From: Paris > >Subject: Re: Where to start?> >To: Soundsensitivity > >Date: Wednesday, December 7, 2011, 3:39 PM> >> >> > > >If you can find a doctor that is familiar with mesophonia that will help, just > >so there are sympathic ears out there that can give her some kind of support > >along with your support. > >> >> >I was just e-mailing with another group person about "stress handlers" trying to > >share information, one thing is if maybe you can go for a walk. Get her > >outside. Does she like music. I find that ipods help a lot. Ear plugs are > >helpful, but they really stress not to use the ear plugs too much because it can > >make the condition worse. Very sparingly.> >> >> >> >> ________________________________> > >To: Soundsensitivity > >Sent: Mon, December 5, 2011 10:31:57 AM> >Subject: Where to start?> >> > > >I am very concerned about how upset my 11 year old daughter is getting...more so > >each day, it seems...with her sensitivity to sounds. It pains me to see her cry, > >wondering why she has to feel this way. I can only offer suggestions, but > >because it's so new to her, and she's so young, I know, to her, it seems > >hopeless right now. Can any of you offer me advice about where to start with > >getting her help outside of our home? Do we talk to her regular doctor > >initially? I'm just not sure where to begin Thank you all.> >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 9, 2011 Report Share Posted December 9, 2011 , what is "social scripting?" To: Soundsensitivity Sent: Fri, December 9, 2011 10:18:16 AMSubject: Re: Re: Where to start? All I can say as to others/familiy moderating their own behavior/noises we leave that up to the person as to how hard they want to try and accomodate my daughter's noise sensitivity. Beyond that, my daughter has to be the one to leave a situation if there are noises she cannot tolerate. If she wants to stay in a situation bad enough, she has leaned that with earplugs and/or her headphones and IPod she can conciously make an effort to ignore the noises or to conciously do calming exercises like deep breathing, or really do what's called "social scripting" in her head....talking herself through the situation can help her not be so reactive. Then in the end if someone is coughing repeatedly...which is her primary trigger...she will end up needing to leave the room anyone despite her best efforts. But I will not allow her to remain in a situation where I know it is likely that she will act out aggressively. So, that is our life everyday....but we have learned to live with it for the most part. Subject: Re: Where to start?To: Soundsensitivity Date: Thursday, December 8, 2011, 8:02 AM , that does sound like quite a challenge. We have not experienced having to leave public places. I've read that many of you are dealing with this. The movie theater appears to be a common issue. My daughter's complaints, right now, are most associated with her dad and her younger sister. I don't know if it's because of how I handle the situation when she might ask me to throw out my gum, or not clink my spoon in my bowl...I don't get as frustrated with her as they do. But they're getting better I must say. It's definitely not an easy adaptation for anyone in our home. She is getting new headphones for Christmas, however We'll travel this path the best we can! Thank you all.> > > >From: Paris > >Subject: Re: Where to start?> >To: Soundsensitivity > >Date: Wednesday, December 7, 2011, 3:39 PM> >> >> > > >If you can find a doctor that is familiar with mesophonia that will help, just > >so there are sympathic ears out there that can give her some kind of support > >along with your support. > >> >> >I was just e-mailing with another group person about "stress handlers" trying to > >share information, one thing is if maybe you can go for a walk. Get her > >outside. Does she like music. I find that ipods help a lot. Ear plugs are > >helpful, but they really stress not to use the ear plugs too much because it can > >make the condition worse. Very sparingly.> >> >> >> >> ________________________________> > >To: Soundsensitivity > >Sent: Mon, December 5, 2011 10:31:57 AM> >Subject: Where to start?> >> > > >I am very concerned about how upset my 11 year old daughter is getting...more so > >each day, it seems...with her sensitivity to sounds. It pains me to see her cry, > >wondering why she has to feel this way. I can only offer suggestions, but > >because it's so new to her, and she's so young, I know, to her, it seems > >hopeless right now. Can any of you offer me advice about where to start with > >getting her help outside of our home? Do we talk to her regular doctor > >initially? I'm just not sure where to begin Thank you all.> >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 10, 2011 Report Share Posted December 10, 2011 Talking ourselves through a situation...in our head or actually out loud in a low voice, but if you talk yourself through a situation our loud they might think that there is more of a problem than just the Misophonia. But in my daughter's case there is....she has a dev. disability, so talking herself through a situation is ok. Subject: Re: Where to start?To: Soundsensitivity Date: Thursday, December 8, 2011, 8:02 AM , that does sound like quite a challenge. We have not experienced having to leave public places. I've read that many of you are dealing with this. The movie theater appears to be a common issue. My daughter's complaints, right now, are most associated with her dad and her younger sister. I don't know if it's because of how I handle the situation when she might ask me to throw out my gum, or not clink my spoon in my bowl...I don't get as frustrated with her as they do. But they're getting better I must say. It's definitely not an easy adaptation for anyone in our home. She is getting new headphones for Christmas, however We'll travel this path the best we can! Thank you all.> > > >From: Paris > >Subject: Re: Where to start?> >To: Soundsensitivity > >Date: Wednesday, December 7, 2011, 3:39 PM> >> >> > > >If you can find a doctor that is familiar with mesophonia that will help, just > >so there are sympathic ears out there that can give her some kind of support > >along with your support. > >> >> >I was just e-mailing with another group person about "stress handlers" trying to > >share information, one thing is if maybe you can go for a walk. Get her > >outside. Does she like music. I find that ipods help a lot. Ear plugs are > >helpful, but they really stress not to use the ear plugs too much because it can > >make the condition worse. Very sparingly.> >> >> >> >> ________________________________> > >To: Soundsensitivity > >Sent: Mon, December 5, 2011 10:31:57 AM> >Subject: Where to start?> >> > > >I am very concerned about how upset my 11 year old daughter is getting...more so > >each day, it seems...with her sensitivity to sounds. It pains me to see her cry, > >wondering why she has to feel this way. I can only offer suggestions, but > >because it's so new to her, and she's so young, I know, to her, it seems > >hopeless right now. Can any of you offer me advice about where to start with > >getting her help outside of our home? Do we talk to her regular doctor > >initially? I'm just not sure where to begin Thank you all.> >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 10, 2011 Report Share Posted December 10, 2011 Talking ourselves through a situation...in our head or actually out loud in a low voice, but if you talk yourself through a situation our loud they might think that there is more of a problem than just the Misophonia. But in my daughter's case there is....she has a dev. disability, so talking herself through a situation is ok. Subject: Re: Where to start?To: Soundsensitivity Date: Thursday, December 8, 2011, 8:02 AM , that does sound like quite a challenge. We have not experienced having to leave public places. I've read that many of you are dealing with this. The movie theater appears to be a common issue. My daughter's complaints, right now, are most associated with her dad and her younger sister. I don't know if it's because of how I handle the situation when she might ask me to throw out my gum, or not clink my spoon in my bowl...I don't get as frustrated with her as they do. But they're getting better I must say. It's definitely not an easy adaptation for anyone in our home. She is getting new headphones for Christmas, however We'll travel this path the best we can! Thank you all.> > > >From: Paris > >Subject: Re: Where to start?> >To: Soundsensitivity > >Date: Wednesday, December 7, 2011, 3:39 PM> >> >> > > >If you can find a doctor that is familiar with mesophonia that will help, just > >so there are sympathic ears out there that can give her some kind of support > >along with your support. > >> >> >I was just e-mailing with another group person about "stress handlers" trying to > >share information, one thing is if maybe you can go for a walk. Get her > >outside. Does she like music. I find that ipods help a lot. Ear plugs are > >helpful, but they really stress not to use the ear plugs too much because it can > >make the condition worse. Very sparingly.> >> >> >> >> ________________________________> > >To: Soundsensitivity > >Sent: Mon, December 5, 2011 10:31:57 AM> >Subject: Where to start?> >> > > >I am very concerned about how upset my 11 year old daughter is getting...more so > >each day, it seems...with her sensitivity to sounds. It pains me to see her cry, > >wondering why she has to feel this way. I can only offer suggestions, but > >because it's so new to her, and she's so young, I know, to her, it seems > >hopeless right now. Can any of you offer me advice about where to start with > >getting her help outside of our home? Do we talk to her regular doctor > >initially? I'm just not sure where to begin Thank you all.> >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 10, 2011 Report Share Posted December 10, 2011 I think everyone has to meet in the middle who live with someone with this condition. We can't expect everyone to constantly control themselves so that never make an offending noise. But if they make an effort to reduce the frequency when in direct contact with the person, then the person with Misophonia can also make concessions at working on being more tolerant or taking the initiative the leave a situation that is becoming intolerable...it is like a dance. My daughter's biggest trigger is coughing, so we try to minimize coughing but when we have to cough we have to cough and if we feel it coming on ahead of time, we can step out of the room first. But if we have a cold, then she will make the choice to stay upstairs in the TV room we have upstairs. Families with a person with Misophonia should try to live in a 2-story house. It makes things so much better to be able to be on different levels...and it doesn't have to be expensive...we live in a very cheap townhouse and it has been good for us all to have our own space. Subject: Re: Where to start?To: Soundsensitivity Date: Thursday, December 8, 2011, 8:02 AM , that does sound like quite a challenge. We have not experienced having to leave public places. I've read that many of you are dealing with this. The movie theater appears to be a common issue. My daughter's complaints, right now, are most associated with her dad and her younger sister. I don't know if it's because of how I handle the situation when she might ask me to throw out my gum, or not clink my spoon in my bowl...I don't get as frustrated with her as they do. But they're getting better I must say. It's definitely not an easy adaptation for anyone in our home. She is getting new headphones for Christmas, however We'll travel this path the best we can! Thank you all.> > > >> >Subject: Re: Where to start?> >To: Soundsensitivity > >Date: Wednesday, December 7, 2011, 3:39 PM> >> >> > > >If you can find a doctor that is familiar with mesophonia that will help, just > >so there are sympathic ears out there that can give her some kind of support > >along with your support. > >> >> >I was just e-mailing with another group person about "stress handlers" trying to > >share information, one thing is if maybe you can go for a walk. Get her > >outside. Does she like music. I find that ipods help a lot. Ear plugs are > >helpful, but they really stress not to use the ear plugs too much because it can > >make the condition worse. Very sparingly.> >> >> >> >> ________________________________> > >To: Soundsensitivity > >Sent: Mon, December 5, 2011 10:31:57 AM> >Subject: Where to start?> >> > > >I am very concerned about how upset my 11 year old daughter is getting...more so > >each day, it seems...with her sensitivity to sounds. It pains me to see her cry, > >wondering why she has to feel this way. I can only offer suggestions, but > >because it's so new to her, and she's so young, I know, to her, it seems > >hopeless right now. Can any of you offer me advice about where to start with > >getting her help outside of our home? Do we talk to her regular doctor > >initially? I'm just not sure where to begin Thank you all.> >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 10, 2011 Report Share Posted December 10, 2011 , I agree with what you are saying in regards to every one meeting in the middle. I find that if my husband makes a conscious effort to not send any triggers to my son and I, it really does help to defuse the situation. Sniffing is a natural reflex. He can't help it. I do the same thing. It's every one trying to work together. To: Soundsensitivity Sent: Sat, December 10, 2011 10:35:08 AMSubject: Re: Re: Where to start? I think everyone has to meet in the middle who live with someone with this condition. We can't expect everyone to constantly control themselves so that never make an offending noise. But if they make an effort to reduce the frequency when in direct contact with the person, then the person with Misophonia can also make concessions at working on being more tolerant or taking the initiative the leave a situation that is becoming intolerable...it is like a dance. My daughter's biggest trigger is coughing, so we try to minimize coughing but when we have to cough we have to cough and if we feel it coming on ahead of time, we can step out of the room first. But if we have a cold, then she will make the choice to stay upstairs in the TV room we have upstairs. Families with a person with Misophonia should try to live in a 2-story house. It makes things so much better to be able to be on different levels...and it doesn't have to be expensive...we live in a very cheap townhouse and it has been good for us all to have our own space. Subject: Re: Where to start?To: Soundsensitivity Date: Thursday, December 8, 2011, 8:02 AM , that does sound like quite a challenge. We have not experienced having to leave public places. I've read that many of you are dealing with this. The movie theater appears to be a common issue. My daughter's complaints, right now, are most associated with her dad and her younger sister. I don't know if it's because of how I handle the situation when she might ask me to throw out my gum, or not clink my spoon in my bowl...I don't get as frustrated with her as they do. But they're getting better I must say. It's definitely not an easy adaptation for anyone in our home. She is getting new headphones for Christmas, however We'll travel this path the best we can! Thank you all.> > > >From: Paris > >Subject: Re: Where to start?> >To: Soundsensitivity > >Date: Wednesday, December 7, 2011, 3:39 PM> >> >> > > >If you can find a doctor that is familiar with mesophonia that will help, just > >so there are sympathic ears out there that can give her some kind of support > >along with your support. > >> >> >I was just e-mailing with another group person about "stress handlers" trying to > >share information, one thing is if maybe you can go for a walk. Get her > >outside. Does she like music. I find that ipods help a lot. Ear plugs are > >helpful, but they really stress not to use the ear plugs too much because it can > >make the condition worse. Very sparingly.> >> >> >> >> ________________________________> > >To: Soundsensitivity > >Sent: Mon, December 5, 2011 10:31:57 AM> >Subject: Where to start?> >> > > >I am very concerned about how upset my 11 year old daughter is getting...more so > >each day, it seems...with her sensitivity to sounds. It pains me to see her cry, > >wondering why she has to feel this way. I can only offer suggestions, but > >because it's so new to her, and she's so young, I know, to her, it seems > >hopeless right now. Can any of you offer me advice about where to start with > >getting her help outside of our home? Do we talk to her regular doctor > >initially? I'm just not sure where to begin Thank you all.> >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 10, 2011 Report Share Posted December 10, 2011 , I agree with what you are saying in regards to every one meeting in the middle. I find that if my husband makes a conscious effort to not send any triggers to my son and I, it really does help to defuse the situation. Sniffing is a natural reflex. He can't help it. I do the same thing. It's every one trying to work together. To: Soundsensitivity Sent: Sat, December 10, 2011 10:35:08 AMSubject: Re: Re: Where to start? I think everyone has to meet in the middle who live with someone with this condition. We can't expect everyone to constantly control themselves so that never make an offending noise. But if they make an effort to reduce the frequency when in direct contact with the person, then the person with Misophonia can also make concessions at working on being more tolerant or taking the initiative the leave a situation that is becoming intolerable...it is like a dance. My daughter's biggest trigger is coughing, so we try to minimize coughing but when we have to cough we have to cough and if we feel it coming on ahead of time, we can step out of the room first. But if we have a cold, then she will make the choice to stay upstairs in the TV room we have upstairs. Families with a person with Misophonia should try to live in a 2-story house. It makes things so much better to be able to be on different levels...and it doesn't have to be expensive...we live in a very cheap townhouse and it has been good for us all to have our own space. Subject: Re: Where to start?To: Soundsensitivity Date: Thursday, December 8, 2011, 8:02 AM , that does sound like quite a challenge. We have not experienced having to leave public places. I've read that many of you are dealing with this. The movie theater appears to be a common issue. My daughter's complaints, right now, are most associated with her dad and her younger sister. I don't know if it's because of how I handle the situation when she might ask me to throw out my gum, or not clink my spoon in my bowl...I don't get as frustrated with her as they do. But they're getting better I must say. It's definitely not an easy adaptation for anyone in our home. She is getting new headphones for Christmas, however We'll travel this path the best we can! Thank you all.> > > >From: Paris > >Subject: Re: Where to start?> >To: Soundsensitivity > >Date: Wednesday, December 7, 2011, 3:39 PM> >> >> > > >If you can find a doctor that is familiar with mesophonia that will help, just > >so there are sympathic ears out there that can give her some kind of support > >along with your support. > >> >> >I was just e-mailing with another group person about "stress handlers" trying to > >share information, one thing is if maybe you can go for a walk. Get her > >outside. Does she like music. I find that ipods help a lot. Ear plugs are > >helpful, but they really stress not to use the ear plugs too much because it can > >make the condition worse. Very sparingly.> >> >> >> >> ________________________________> > >To: Soundsensitivity > >Sent: Mon, December 5, 2011 10:31:57 AM> >Subject: Where to start?> >> > > >I am very concerned about how upset my 11 year old daughter is getting...more so > >each day, it seems...with her sensitivity to sounds. It pains me to see her cry, > >wondering why she has to feel this way. I can only offer suggestions, but > >because it's so new to her, and she's so young, I know, to her, it seems > >hopeless right now. Can any of you offer me advice about where to start with > >getting her help outside of our home? Do we talk to her regular doctor > >initially? I'm just not sure where to begin Thank you all.> >> >> Quote Link to comment Share on other sites More sharing options...
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