Guest guest Posted December 4, 2008 Report Share Posted December 4, 2008 Hello, I remember that was were I went first looking for answers, and you helped and guided me here, has so much changed in that time? People seemed supportive then with so many ideas, mind you two or three, including your self, where from here. Thanks for that by the way, really really helped J I will go have a look From: Soundsensitivity [mailto:Soundsensitivity ] On Behalf Of Darlene Sent: Thursday, 4 December 2008 5:13 PM To: Soundsensitivity Subject: I could use your help I am getting so frustrated with this. I posted the letter that many of us have received from the NIH over at the Hyperacusis Network site so that anyone there with 4S could see the e-mail address and know where to seek help. I found that place first when I initially searched for sound sensitivity on the web. There are still so many people with this who end up there too. Of course I always direct them here. I expected everyone there to be excited but as usual.... it started an argument as to what 4S really is. They won't even let you say " 4S " or " selective soft sound sensitivity " on that site because it's not a " recognized " medical term. So, you have to use the term " Misophonia " . I've got people telling me it's " My Problem " and the " No one can help you " being thrown at me. That is the whole reason I tell everyone I see there to come here. This place is non- judgmental and supportive in every way. Here people listen, there people argue. This is of course with exception to a few people who are really trying to understand this conditon and offer their advice and help (Lynn McLaren and Debbie are two great folks there). Anyhow, what I'm getting at is if any of you have time to pop over to that site and offer your two cents worth I'd appreciate it. Even Dr. added to the convo which I was happy to see. Here's the place... http://www.hyperacusis.net/ On the left side, click on " join the message board " Then click on " New Messages " and then on " NIH study for those with Misophonia " . I go by the name Gizmookie there. Thanks. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 4, 2008 Report Share Posted December 4, 2008 Darlene I did pop over and have a read. I loved the mental image of you blowing up the brain wave machine on being exposed to a trigger. Very funny! ) Guy -----Original Message-----From: gizziecookie@...Sent: Thu, 04 Dec 2008 06:12:42 -0000To: soundsensitivity Subject: I could use your help I am getting so frustrated with this. I posted the letter that many of us have received from the NIH over at the Hyperacusis Network site so that anyone there with 4S could see the e-mail address and know where to seek help. I found that place first when I initially searched for sound sensitivity on the web. There are still so many people with this who end up there too. Of course I always direct them here. I expected everyone there to be excited but as usual.... it started an argument as to what 4S really is. They won't even let you say "4S" or "selective soft sound sensitivity" on that site because it's not a "recognized" medical term. So, you have to use the term "Misophonia". I've got people telling me it's "My Problem" and the "No one can help you" being thrown at me. That is the whole reason I tell everyone I see there to come here. This place is non-judgmental and supportive in every way. Here people listen, there people argue. This is of course with exception to a few people who are really trying to understand this conditon and offer their advice and help (Lynn McLaren and Debbie are two great folks there). Anyhow, what I'm getting at is if any of you have time to pop over to that site and offer your two cents worth I'd appreciate it. Even Dr. added to the convo which I was happy to see. Here's the place...http://www.hyperacusis.net/ On the left side, click on "join the message board" Then click on "New Messages" and then on "NIH study for those with Misophonia". I go by the name Gizmookie there.Thanks. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 4, 2008 Report Share Posted December 4, 2008 Hi Darlene,I went to the Hyperacusis Board and was quite shocked by some of the responses to the info your posted about the NIH study. I'm sorry that happened to you Darlene, and I feel bad because I asked you to post Dr. Carmen Brewers email address on that Board. I genuinely thought that there would be people there interested in applying to the NIH. These 'arguments' about Misophonia vs 4S are not helpful, and for me they just underline the need for a medical study of whatever this darn this is. I genuinely thought that people with Misophonia might be interested to know about this study and want to apply. I still think you have done the right thing, so thank you, again. Kind regards,Ingrid.Hello, I remember that was were I went first looking for answers, and you helped and guided me here, has so much changed in that time? People seemed supportive then with so many ideas, mind you two or three, including your self, where from here. Thanks for that by the way, really really helped J I will go have a look From: Soundsensitivity [mailto:Soundsensitivity ] On Behalf Of DarleneSent: Thursday, 4 December 2008 5:13 PMTo: Soundsensitivity Subject: I could use your help I am getting so frustrated with this. I posted the letter that many of us have received from the NIH over at the Hyperacusis Network site so that anyone there with 4S could see the e-mail address and know where to seek help. I found that place first when I initially searched for sound sensitivity on the web. There are still so many people with this who end up there too. Of course I always direct them here. I expected everyone there to be excited but as usual.... it started an argument as to what 4S really is. They won't even let you say "4S" or "selective soft sound sensitivity" on that site because it's not a "recognized" medical term. So, you have to use the term "Misophonia". I've got people telling me it's "My Problem" and the "No one can help you" being thrown at me. That is the whole reason I tell everyone I see there to come here. This place is non-judgmental and supportive in every way. Here people listen, there people argue. This is of course with exception to a few people who are really trying to understand this conditon and offer their advice and help (Lynn McLaren and Debbie are two great folks there). Anyhow, what I'm getting at is if any of you have time to pop over to that site and offer your two cents worth I'd appreciate it. Even Dr. added to the convo which I was happy to see. Here's the place...http://www.hyperacusis.net/ On the left side, click on "join the message board" Then click on "New Messages" and then on "NIH study for those with Misophonia". I go by the name Gizmookie there.Thanks. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 4, 2008 Report Share Posted December 4, 2008 Thanks . At first when I was there it was the same way... supportive. However, if it's an issue with " 4S " it always turns into an arugment except for a few people. They insist it's " misophonia " ... nuff said. They are very supportive there for those with hyperacusis, it just seems that this is a better place for those like us. You are very welcome by the way > > Hello, > > > > I remember that was were I went first looking for answers, and you helped > and guided me here, has so much changed in that time? People seemed > supportive then with so many ideas, mind you two or three, including your > self, where from here. Thanks for that by the way, really really helped J > > > > I will go have a look > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 4, 2008 Report Share Posted December 4, 2008 Glad to provide a laugh Guy! It's all we can do right? I swear I 'would' blow up the machine and probably the whole buiding as well. I'm sure you all know what I mean by how angry we become! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 4, 2008 Report Share Posted December 4, 2008 Hi Ingrid! Don't be sorry about anything... I thought it would be a great idea myself to spread the exciting news. I volunteered to do it because I knew what I may encounter... arguing. LOL. Now you understand why I send everyone I see there with 4S to this site!! I will keep up the fight!! > > Hi Darlene, > > I went to the Hyperacusis Board and was quite shocked by some of the > responses to the info your posted about the NIH study. I'm sorry that > happened to you Darlene, and I feel bad because I asked you to post > Dr. Carmen Brewers email address on that Board. I genuinely thought > that there would be people there interested in applying to the NIH. > These 'arguments' about Misophonia vs 4S are not helpful, and for me > they just underline the need for a medical study of whatever this darn > this is. I genuinely thought that people with Misophonia might be > interested to know about this study and want to apply. I still think > you have done the right thing, so thank you, again. > > Kind regards, > Ingrid. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 4, 2008 Report Share Posted December 4, 2008 LOL LOL LOL :::: If we do get this study off the ground, we'll need to make sure Darlene is in LAST - no one can be allowed to explode in the machinery before everyone has been tested! - and if this does eventuate, I really wish this group could try to get together somehow to celebrate. It will be a huge step just to be studied! In case you can't tell, I'm desperate for some progress!!! I think I'm only just coming back from feeling depressed about the initial rejection from the Undiagnosed Diseases Unit, I'm still feel angry about that. Argh. > > Glad to provide a laugh Guy! It's all we can do right? I swear > I 'would' blow up the machine and probably the whole buiding as > well. I'm sure you all know what I mean by how angry we become! > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 4, 2008 Report Share Posted December 4, 2008 Ingrid, LOL... I will go last for the sake of all Thanks for posting over at the hyperacusis site... I can see they have already picked apart everything you've said as well. Aw well... they can have their fun. > > LOL LOL LOL :::: If we do get this study off the ground, we'll need to > make sure Darlene is in LAST - no one can be allowed to explode in the > machinery before everyone has been tested! > > > - and if this does eventuate, I really wish this group could try to > get together somehow to celebrate. It will be a huge step just to be > studied! > > In case you can't tell, I'm desperate for some progress!!! > I think I'm only just coming back from feeling depressed about the > initial rejection from the Undiagnosed Diseases Unit, I'm still feel > angry about that. Argh. > > > Quote Link to comment Share on other sites More sharing options...
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