Guest guest Posted December 9, 2008 Report Share Posted December 9, 2008 Hello to all! I am new to this group, and all I can say is thank God I have finally found others with the same condition as mine. I am now almost 32 and just figured I was an isolated case of some weird hypersensitive/irritability to noise since my teens.I found this group by searching on the Internet after I felt I needed some answers. I have really considered purchasing the ear devices Dr. has developed. Has anybody else tried them? I also had read about vitamins and wondered if they helped for others.Like others I am really bothered by noises that seemingly go unnoticed by most, and I am certain now from reading others testimonials that this is how most people feel as well.If you would please let me know of certain remedies you have found...if any. I am thinking of all of you, and hope that one day I will be able to breathe a sigh of relief. I am still holding my breath.God Bless.Jacqui Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 9, 2008 Report Share Posted December 9, 2008 Hi Jacqui and welcome to the group!!! )It hasn't been that long that I joined this group also and I can relate to your relief upon finding other people who share our condition. mentioned a condition called "pyroluria" and she has been taking vitamin B6 and zinc supplements which I have also started on. She can tell you more about how they have affected her. I have been taking them for less than one week and I do notice a difference, an improvement...though it hasn't been long enough to tell for sure. I will let you know how it goes.I know there was a wonderful survey that one of the other members sent around with several questions about when your 4s started and your reactions to the triggers. Please feel welcome to share your experiences with the group )Kind Regards,andraTo: Soundsensitivity Sent: Wednesday, December 10, 2008 9:46:52 AMSubject: Holding my breath Hello to all! I am new to this group, and all I can say is thank God I have finally found others with the same condition as mine. I am now almost 32 and just figured I was an isolated case of some weird hypersensitive/irritability to noise since my teens.I found this group by searching on the Internet after I felt I needed some answers. I have really considered purchasing the ear devices Dr. has developed. Has anybody else tried them? I also had read about vitamins and wondered if they helped for others.Like others I am really bothered by noises that seemingly go unnoticed by most, and I am certain now from reading others testimonials that this is how most people feel as well.If you would please let me know of certain remedies you have found...if any. I am thinking of all of you, and hope that one day I will be able to breathe a sigh of relief. I am still holding my breath.God Bless.Jacqui Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 9, 2008 Report Share Posted December 9, 2008 Hi Jacqui! I wanted to extend a warm welcome to you! I am 35 and discoverd this group myself within the last year. It's been a blessing in my life. It's a great group. I have not personally tried the ear devices myself so I can't offer any advice on that. For me personally I find that wearing earplugs makes it worse. It's far better to try and use things to mask (not completely hide) the offending sounds. For example, using an ipod during meals or using a fan or sound machine, etc... I never blast it too loud, just enough to take the edge off the offending sound. I find anti-anxiety meds help with the anticipation of sounds but does nothing for the reaction to the sounds themselves. There's lots of advice here and many days worth of reading! I hope you will find something that can help you. Welcome! Darlene > > Hello to all! I am new to this group, and all I can say is thank God I have finally found others with the same condition as mine. I am now almost 32 and just figured I was an isolated case of some weird hypersensitive/irritability to noise since my teens. > > I found this group by searching on the Internet after I felt I needed some answers. I have really considered purchasing the ear devices Dr. has developed. Has anybody else tried them? I also had read about vitamins and wondered if they helped for others. > > Like others I am really bothered by noises that seemingly go unnoticed by most, and I am certain now from reading others testimonials that this is how most people feel as well. > > If you would please let me know of certain remedies you have found...if any. I am thinking of all of you, and hope that one day I will be able to breathe a sigh of relief. I am still holding my breath. > > God Bless. > Jacqui > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 9, 2008 Report Share Posted December 9, 2008 Hi Jacqui,Welcome. I hope you find this place as supportive and informative as I have. I've from Sydney and have had 4s for 39 years - so I know exactly how you feel and what you suffer with. It can be tough.I have not tried the ear devices that Dr. talks about, my *understanding* is they are useful while you are wearing them but don't seem to have any long term benefit for people with 4S. But I'm not an expert; I enquired directly to Dr. J via her email address on the home page of this site, and she sent me a lot of useful information about the treatments, and responded directly to my enquiries about it. I remember thinking that if I was still at university I probably would have gone ahead and tried them, but in my current situation they may not be particularly useful; but everyone is different.Once you've had a moment to find out about this group, you might like to consider finding out about the possible NIH study into soft sound sensitivity. Some people here have applied to participate in the study, if you explore some of the slightly older threads you'll find out more about it. Anyway, welcome again.CheersIngrid.Hello to all! I am new to this group, and all I can say is thank God I have finally found others with the same condition as mine. I am now almost 32 and just figured I was an isolated case of some weird hypersensitive/irritability to noise since my teens.I found this group by searching on the Internet after I felt I needed some answers. I have really considered purchasing the ear devices Dr. has developed. Has anybody else tried them? I also had read about vitamins and wondered if they helped for others.Like others I am really bothered by noises that seemingly go unnoticed by most, and I am certain now from reading others testimonials that this is how most people feel as well.If you would please let me know of certain remedies you have found...if any. I am thinking of all of you, and hope that one day I will be able to breathe a sigh of relief. I am still holding my breath.God Bless.Jacqui Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 10, 2008 Report Share Posted December 10, 2008 Hi Jacqui, Welcome to the group! I wear the sound generators and got them through Dr. . They help to filter out sounds like clocks ticking and computer mouse clicks. But for me they don't help much with my trigger sounds like dishes and keys. I also have really bad loud high pitched tinnitus and the sound generators help to take some of the edge off of that too. If you can afford them I recommend buying them because they generate sound inside the ear. I also use headphones that go over the ear to listen to a brown noise on my MP3 player in addition to the sound generators. Or you could just use the head phones by themselves. Here is a link to a 30 minute version of the Brown Noise MP3 I use: http://www.coderand.com/brown-noise30min.mp3 I am glad you found the group. We are all here looking for a cure to this horrible affliction. I also recommend if you have time to look through the archives of posts for the last several months of this group. A lot of information in there. Take care, Randall Jacqui Niel wrote: > > > Hello to all! I am new to this group, and all I can say is thank God I > have finally found others with the same condition as mine. I am now > almost 32 and just figured I was an isolated case of some weird > hypersensitive/irritability to noise since my teens. > > I found this group by searching on the Internet after I felt I needed > some answers. I have really considered purchasing the ear devices Dr. > has developed. Has anybody else tried them? I also had read > about vitamins and wondered if they helped for others. > > Like others I am really bothered by noises that seemingly go unnoticed > by most, and I am certain now from reading others testimonials that this > is how most people feel as well. > > If you would please let me know of certain remedies you have found...if > any. I am thinking of all of you, and hope that one day I will be able > to breathe a sigh of relief. I am still holding my breath. > > God Bless. > Jacqui Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 10, 2008 Report Share Posted December 10, 2008 Hi Jacqui, It's such a relief finding this group, isn't it? Not that you'd wish this condition on your worst enemy, but it's great to know you're not alone. There are a lot of interesting things going on in the group right now. Some of us have been in contact with the NIH, and we have drummed up some interest in a possible research study. We have a website--www.soundsensitive.org--that site and the files section of this group site have a lot of good info. People are always sharing things they've tried that have been helpful, but so far no one has found a "cure" or even a treatment that consistently works. I've been trying the vitamin experiment andra mentioned. I suspect I have something called "pyroluria", which is related to depression, anxiety, and other mental conditions, and the symptoms include sound sensitivity. I'm taking zinc and the p5p form of vitamin b-6, and I've seen some improvement in my overall sensitivity to sound. Email me if you'd like more info, or google "pyroluria" or "pyrroluria". Omega-3 supplements have been helpful for some too. Welcome to the group, and I hope you find something here that helps you! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 10, 2008 Report Share Posted December 10, 2008 Hi ,Relief..yes, and somewhat excited that some claims to these vitamin treatments are beneficial. I picked up the p5p B6 today, and wondered how many mgs of that, as well as zinc you take daily? I take synthroid for my thyroid condition (condition being I had cancer and no longer have a thyroid). You are 100% correct when you say you wouldn't wish this on your worst enemy. My current work condition is at times unbearable because of the low sustained machinery hum/repetitive idling. I want to tolerate it, and I am hoping these supplements can help.I tried find the website you mentioned below and could not find it. Is it www.soundsensitive.org?Have a great night.JacquiTo: Soundsensitivity Sent: Wednesday, December 10, 2008 10:55:52 AMSubject: Re:Holding my breath Hi Jacqui, It's such a relief finding this group, isn't it? Not that you'd wish this condition on your worst enemy, but it's great to know you're not alone. There are a lot of interesting things going on in the group right now. Some of us have been in contact with the NIH, and we have drummed up some interest in a possible research study. We have a website--www. soundsensitive. org--that site and the files section of this group site have a lot of good info. People are always sharing things they've tried that have been helpful, but so far no one has found a "cure" or even a treatment that consistently works. I've been trying the vitamin experiment andra mentioned. I suspect I have something called "pyroluria", which is related to depression, anxiety, and other mental conditions, and the symptoms include sound sensitivity. I'm taking zinc and the p5p form of vitamin b-6, and I've seen some improvement in my overall sensitivity to sound. Email me if you'd like more info, or google "pyroluria" or "pyrroluria" . Omega-3 supplements have been helpful for some too. Welcome to the group, and I hope you find something here that helps you! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 11, 2008 Report Share Posted December 11, 2008 Hi Jacqui, I'm hesitant to give advice on how much of anything people should take--I only what I've read online and heard from a friend who is informed on the subject. I take 150 mg of b-6, which isn't a very high dose. I'm increasing it slowly. I take 60 mg of zinc, which also isn't a huge amount. I tend to be careful with supplements, since I take prescription drugs and I just think it's wise. There are websites that will help you figure out if drugs and supplements you're taking will have any interactions, but it's probably best to ask a pharmacist. They're better informed about drug interactions than most doctors, in my experience. I've noticed that if I take the b-6 too late in the day I have crazy vivid dreams. I try to take them all by the early afternoon. About the website--it's been hacked apparently. I just went there and found some crazy Russian rap music playing loudly, so everyone beware of the site until we get this figured out. > > Hi , > > Relief..yes, and somewhat excited that some claims to these vitamin treatments are beneficial. I picked up the p5p B6 today, and wondered how many mgs of that, as well as zinc you take daily? I take synthroid for my thyroid condition (condition being I had cancer and no longer have a thyroid). You are 100% correct when you say you wouldn't wish this on your worst enemy. My current work condition is at times unbearable because of the low sustained machinery hum/repetitive idling. I want to tolerate it, and I am hoping these supplements can help. > > I tried find the website you mentioned below and could not find it. Is it www.soundsensitive.org? > > Have a great night. > Jacqui > > > > > ________________________________ > > To: Soundsensitivity > Sent: Wednesday, December 10, 2008 10:55:52 AM > Subject: Re:Holding my breath > > > Hi Jacqui, > > It's such a relief finding this group, isn't it? Not that you'd wish this condition on your worst enemy, but it's great to know you're not alone. There are a lot of interesting things going on in the group right now. Some of us have been in contact with the NIH, and we have drummed up some interest in a possible research study. We have a website--www. soundsensitive. org--that site and the files section of this group site have a lot of good info. People are always sharing things they've tried that have been helpful, but so far no one has found a " cure " or even a treatment that consistently works. I've been trying the vitamin experiment andra mentioned. I suspect I have something called " pyroluria " , which is related to depression, anxiety, and other mental conditions, and the symptoms include sound sensitivity. I'm taking zinc and the p5p form of vitamin b-6, and I've seen some improvement in my overall sensitivity to sound. Email me if > you'd like more info, or google " pyroluria " or " pyrroluria " . Omega-3 supplements have been helpful for some too. > > Welcome to the group, and I hope you find something here that helps you! > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 11, 2008 Report Share Posted December 11, 2008 Far out!!! I was just at the site and thought it was me...phew. Now what?To: Soundsensitivity Sent: Thursday, December 11, 2008 10:13:25 AMSubject: Re:Holding my breath Hi Jacqui, I'm hesitant to give advice on how much of anything people should take--I only what I've read online and heard from a friend who is informed on the subject. I take 150 mg of b-6, which isn't a very high dose. I'm increasing it slowly. I take 60 mg of zinc, which also isn't a huge amount. I tend to be careful with supplements, since I take prescription drugs and I just think it's wise. There are websites that will help you figure out if drugs and supplements you're taking will have any interactions, but it's probably best to ask a pharmacist. They're better informed about drug interactions than most doctors, in my experience. I've noticed that if I take the b-6 too late in the day I have crazy vivid dreams. I try to take them all by the early afternoon. About the website--it' s been hacked apparently. I just went there and found some crazy Russian rap music playing loudly, so everyone beware of the site until we get this figured out. > > Hi , > > Relief..yes, and somewhat excited that some claims to these vitamin treatments are beneficial. I picked up the p5p B6 today, and wondered how many mgs of that, as well as zinc you take daily? I take synthroid for my thyroid condition (condition being I had cancer and no longer have a thyroid). You are 100% correct when you say you wouldn't wish this on your worst enemy. My current work condition is at times unbearable because of the low sustained machinery hum/repetitive idling. I want to tolerate it, and I am hoping these supplements can help. > > I tried find the website you mentioned below and could not find it. Is it www.soundsensitive. org? > > Have a great night. > Jacqui > > > > > ____________ _________ _________ __ > From: <smharde@... > > To: Soundsensitivity@ yahoogroups. com > Sent: Wednesday, December 10, 2008 10:55:52 AM > Subject: Re:Holding my breath > > > Hi Jacqui, > > It's such a relief finding this group, isn't it? Not that you'd wish this condition on your worst enemy, but it's great to know you're not alone. There are a lot of interesting things going on in the group right now. Some of us have been in contact with the NIH, and we have drummed up some interest in a possible research study. We have a website--www. soundsensitive. org--that site and the files section of this group site have a lot of good info. People are always sharing things they've tried that have been helpful, but so far no one has found a "cure" or even a treatment that consistently works. I've been trying the vitamin experiment andra mentioned. I suspect I have something called "pyroluria", which is related to depression, anxiety, and other mental conditions, and the symptoms include sound sensitivity. I'm taking zinc and the p5p form of vitamin b-6, and I've seen some improvement in my overall sensitivity to sound. Email me if > you'd like more info, or google "pyroluria" or "pyrroluria" . Omega-3 supplements have been helpful for some too. > > Welcome to the group, and I hope you find something here that helps you! > > Quote Link to comment Share on other sites More sharing options...
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