New to the group

June 15, 2001

Hi,

My name is Cassandra. I was born with a tumor at the base of my

spine, also, I have tethered cord syndrome. I have had several

surgeries to remove the tumor and one for tethered cord, also a couple

of foot surgeries. I would like to hear what others have experienced

with their tethered cord, how who are coping and looking for

information in general. Look forward to hearing from you. Cassandra

June 16, 2001

At 12:52 PM 6/15/2001 -0500, Garrett wrote:

Hello

I am new to your group. My

daughter Brittany has spina bifida.

At 06:30 PM 6/15/2001 +0000,

littlekitten234@... wrote:

Hi,

My name is Cassandra. I was born with a tumor at the base of my

spine, also, I have tethered cord syndrome. I

Hi and Casandra,

Welcome to the list! I do not have SB or any form of it but many

people on this list do and will fill you in as soon as they can. I went

through just under 8,000 messages and extracted out 97 of them that had

Spina Bifida or SB in the subject line. I saved it all as a text

file that I can send to you if you want. However it is a little difficult

reading as many of them have the HTML format in text. The file is 360K

(not big) so if you want to look at it, let me know.

Rick

spinal AVM 97, TC release 99

March 26, 2009

Hi staiglee,Welcome to this group and thanks for sharing your story with us. When I first found this group I cried on and off for days. I'm 49 and have had this since I was 11 or 12, and until I found this group I'd never really spoken much about it and always tried to hide my 4S - which is tough a lot of the time. Finding others like me in this group has helped me enormously to feel less freakish and isolated by my sound sensitivities. I speak up about it more often these days without feeling totally ashamed and ridiculously apologetic, which helps me out quite a lot in work situations where people are eating. So even though there is no cure or standard treatment for Misophonia / 4S there are plenty of coping strategies which sometimes help us to get by. There is also the possibility of a study by the National Institute of Health into this disorder, which many people here are very hopeful about. You can find out more by reading through the old posts.I relate to everything you said about people's eating noises and some of the other trigger sounds you mention are also intolerable for me. There is lots of good reading here in this forum and it is a very gentle and supportive place, so take time to read through the old posts and feel free to ask questions. Sorry for the short response, I really just wanted to welcome you on board here.Ingrid.First I want to thank you all for writing about this online- I found you first thru a hyperacusis form, which actually helped a lot in and of itself. I can't wait to read through your thousands of posts on this sound sensitivity/misophonia group, it just might take me a while! I am a highly functioning adult in my late 20s that finally now knows that I have suffered from some sort of sound sensitivity/misophonia my entire life (or at least as long as I can remember). My earliest memories about my sensitivity are unpleasant- taking long roadtrips with my grandfather (whom I love so much, but he could send any one of you into a tailspin- just no recognition of the God-awful noise he makes whatsoever), and dinnertime conversations with my family where they would tease me, call me fanatical or picky, and make loud sounds on purpose to laugh at me and minimize the pain it caused me. For better or for worse, my personality type is outgoing, sensitive to others, a people pleasing perfectionist, socially warm and sensitive... but that's just my outward, on the surface personality. For people who know me and work or live closely with me, I am highly efficient, fast-paced, and slightly demanding. So the sound thing fits in with this part of my personality. I'm not sure which came first. But I have noticed something about my misophonia/sound sensitivity- the noises that bother me the most are noises that reflect any sort of failure. I hope this makes sense because I'm still working it out. But shuffling shoes (just pick up your feet!), repetitive sounds while looking for something (it's right there- find it already!), banging noises while trying to fix or make something (hurry up, can't you do it faster)... These noises signify some sort of slowness, failure, inadequacy that really bothers me. Of course, when it comes to food its the opposite, and like most of you, I gather, this is the one that REALLY irritates me. People that eat loudly, and sometimes people that eat at all, are intolerable for me. I've tried for this not to be the case, but if someone next to me is eating a sandwich, gum, popcorn, drinking annoyingly, etc, I just totally can't handle it. It does make me irritable and angry, I shoot angry looks at them (which is NOT my personality- not the personality of any people pleaser), and I count down the minutes until I don't have to be around them any longer. I was honest about this when I was dating my husband, and he kind of laughed it off and made me feel like it wasn't that big of a deal, which I assumed was a good sign. Now its definitely become a problem- it comes up at least once a day, I don't enjoy eating with him, but we love to cook beautiful food. I even feel guilt with what I just wrote because I love him and don't want him to feel like its his fault, but I really can't help it. But, I REALLY want him to start making concerted efforts to try harder. I have some friends who I honestly can eat around. It's not a perfect experience, but it's not too bad. They have excellent manners, take very small bites, and magically don't make that much noise. I am not sure why I didn't search this out in a partner, but I know it would have made the day-to-day a lot easier. Anyway, I just wanted to introduce myself and thank you all for sharing your lives and sensitivities. Just knowing this is real has helped me a lot. A few weeks ago when I found that first forum and read the stories that were similar to mine I cried a lot and just walked around totally transfixed with this new world out there. It changed a lot for me, and I actually feel so much better in my day-to-day experiences knowing that it's not necessarily my fault. S. Lee

March 26, 2009

I really appreciate all of your introductions and the support already! I've learned lots even in these past few days, and I've found that my reactions to certain situations are much better... Less aggravated over several minutes of noise, I'm better at just dealing with it right away... ("Dear, I can not physically handle the sound of the garbage can scraping like that." etc.) It's helped. I'm looking forward to further participation with the group!To: Soundsensitivity@...Sent: Thursday, March 26, 2009 7:33:37 AMSubject: Re: New to the Group

Hi staiglee,Welcome to this group and thanks for sharing your story with us. When I first found this group I cried on and off for days. I'm 49 and have had this since I was 11 or 12, and until I found this group I'd never really spoken much about it and always tried to hide my 4S - which is tough a lot of the time. Finding others like me in this group has helped me enormously to feel less freakish and isolated by my sound sensitivities. I speak up about it more often these days without feeling totally ashamed and ridiculously apologetic, which helps me out quite a lot in work situations where people are eating. So even though there is no cure or standard treatment for Misophonia / 4S there are plenty of coping strategies which sometimes help us to get by. There is also the possibility of a study by the National Institute of Health into this disorder, which many people here are very hopeful about. You can find out

more by reading through the old posts.I relate to everything you said about people's eating noises and some of the other trigger sounds you mention are also intolerable for me. There is lots of good reading here in this forum and it is a very gentle and supportive place, so take time to read through the old posts and feel free to ask questions. Sorry for the short response, I really just wanted to welcome you on board here.Ingrid.First I want to thank you all for writing about this online- I found you first thru a hyperacusis form, which actually helped a lot in and of itself. I can't wait to read through your thousands of posts on this sound sensitivity/ misophonia group, it just might take me a while! I am a highly functioning adult in my late 20s that finally now knows that I have suffered from some sort of sound sensitivity/ misophonia my entire life (or at least as long as I can remember). My earliest memories about my sensitivity are unpleasant- taking long roadtrips with my grandfather (whom I love so much, but he could send any one of you into a tailspin- just no recognition of the God-awful noise he makes whatsoever), and dinnertime conversations with my family where they would tease me, call me fanatical or picky, and

make loud sounds on purpose to laugh at me and minimize the pain it caused me. For better or for worse, my personality type is outgoing, sensitive to others, a people pleasing perfectionist, socially warm and sensitive... but that's just my outward, on the surface personality. For people who know me and work or live closely with me, I am highly efficient, fast-paced, and slightly demanding. So the sound thing fits in with this part of my personality. I'm not sure which came first. But I have noticed something about my misophonia/sound sensitivity- the noises that bother me the most are noises that reflect any sort of failure. I hope this makes sense because I'm still working it out. But shuffling shoes (just pick up your feet!), repetitive sounds while looking for something (it's right there- find it already!), banging noises while trying to fix or make something (hurry up, can't you do it faster)...

These noises signify some sort of slowness, failure, inadequacy that really bothers me. Of course, when it comes to food its the opposite, and like most of you, I gather, this is the one that REALLY irritates me. People that eat loudly, and sometimes people that eat at all, are intolerable for me. I've tried for this not to be the case, but if someone next to me is eating a sandwich, gum, popcorn, drinking annoyingly, etc, I just totally can't handle it. It does make me irritable and angry, I shoot angry looks at them (which is NOT my personality- not the personality of any people pleaser), and I count down the minutes until I don't have to be around them any longer. I was honest about this when I was dating my husband, and he kind of laughed it off and made me feel like it wasn't that big of a deal, which I assumed was a good sign. Now its definitely

become a problem- it comes up at least once a day, I don't enjoy eating with him, but we love to cook beautiful food. I even feel guilt with what I just wrote because I love him and don't want him to feel like its his fault, but I really can't help it. But, I REALLY want him to start making concerted efforts to try harder. I have some friends who I honestly can eat around.. It's not a perfect experience, but it's not too bad. They have excellent manners, take very small bites, and magically don't make that much noise. I am not sure why I didn't search this out in a partner, but I know it would have made the day-to-day a lot easier. Anyway, I just wanted to introduce myself and thank you all for sharing your lives and sensitivities. Just knowing this is real has helped me a lot. A few weeks ago when I found that first forum and read the stories that were similar to mine I cried a lot and just walked

around totally transfixed with this new world out there. It changed a lot for me, and I actually feel so much better in my day-to-day experiences knowing that it's not necessarily my fault. S. Lee

August 6, 2009

I know none of us here are weird, or loony but I have yet another strange doctor's waiting room story to share....

Today I sat in the waiting room awaiting my first cortisone injection for the frozen shoulder I've had this year and the receptionist spent about 15 minutes unpacking large sheets of printed information rolled up with rubber bands. She had to unroll the rubber band from each rolled up sheet, oh my goodness, my head just about exploded from that *noise* the rubber bands made!!! (for those of you who don't know me, rubber bands are a strange little trigger for me). Ughhhh the sight of them, the sound of them, I had tears in my eyes I was getting so worked up with that horrible noise. *shudders* I just can't stand them. I was a nervous wreck walking into the doctor's room. And that horrible cortisone injection didn't help things.

I was talking to my daughter about it tonight, and she is very understanding, and even says she understands, but I have to ask myself, who in their right mind could possibly 'understand' my thing with stupid rubber bands??? It just sounds crazy. Yet for me the noise they make is on the same level of arrrgggh that my dad's eating is.

Anyone else without 4S reading this would think I'm off with the pixies

Adrienne

To: Soundsensitivity Sent: Thursday, 6 August, 2009 4:12:34 PMSubject: Re: New to the group

Hi and welcome to the group! It's nice knowing you are not alone in this... it makes you feel a little less weird Most of my family knows of my condition. I thought I was weird too until a little over a year ago when I started looking into this. Since then, I've explained to my husband, and family about why I act the way I do. My husband used to think I was loony until he read a little about it. He now helps me out best he can. It helps having this website to show them that you are not alone in feeling this way... that it's an actual condition. You will have those who are intrigued by it and will help you out, and you will have those who still insist it's in our heads and we could stop if we wanted to. They are usually the ones who also deliberately provoke. My advice is to show them other posts here and let them see that it's real. Be honest with them and how it makes you feel. Make them understand that you leaving the room is nothing

personal against them... it's just something you must do to keep your sanity! LOL. But be prepared for strange looks and perhaps them not getting it. People who don't have this can never fully understand but they can try. I hope finding this site will help you out and that whomever you tell will respect your feelings. Best of luck. Darlene>> Hello, my name is and I am new to this group. I am 16 and didn't know I had misophonia until just recently, I always just thought I was weird. I am so glad to know that I am not the only one going through this, I just wanted to know if any of you have families or friends that you have told about your misophonia that understand and accommodate to your

situation. I'd also like to know how you were able to explain it to them. My family always makes fun of me when I run out of the room if they are eating, and my friends get mad at me if I try to walk out of the room when they eat or bite their nails. I really hate it when they are like that and I would really appreciate any advice on how to explain to them about this disorder. Thank you.>

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August 11, 2009

>Hey .

At least you are 16 and realize that you are not crazy! I went for many years

(probably age 10) and I am now 41, thinking there was really something about me

that was not right.

My husband really does not understand and kind of laughs about it. My sister and

mom know a little. It is hard to explain to others because they say " well just

tune it out " and you can't. I avoid the situations most of the time, like leave

the room before I get all anxious and then bite someone's head off because the

may be banging a dish or rattling a bag, or clicking the computer mouse!

For me, my main issues have been at work and finding it hard to concentrate when

someone is chewing gum etc..

I wish someone could say just take this pill and it will go away, but that has

not happened yet. I have not been to this site in awhile so maybe I missed

something.

Dawn.

> Hello, my name is and I am new to this group. I am 16 and didn't know

I had misophonia until just recently, I always just thought I was weird. I am so

glad to know that I am not the only one going through this, I just wanted to

know if any of you have families or friends that you have told about your

misophonia that understand and accommodate to your situation. I'd also like to

know how you were able to explain it to them. My family always makes fun of me

when I run out of the room if they are eating, and my friends get mad at me if I

try to walk out of the room when they eat or bite their nails. I really hate it

when they are like that and I would really appreciate any advice on how to

explain to them about this disorder. Thank you.

>

August 12, 2009

I've been in the closet for 47 years. It's great that you guys are

figuring it out before I did!! Haven't had much success sharing with

family, the small amount I have, and 1 friend--not a good response,

just deal with it from them. Right. Hope you come through better.

But no matter my age, it's good to know there are so many others out

there who understand. I just hope something can help someday.

Re: New to the group

>Hey .

At least you are 16 and realize that you are not crazy! I went for many

years (probably age 10) and I am now 41, thinking there was really

something about me that was not right.

My husband really does not understand and kind of laughs about it. My

sister and mom know a little. It is hard to explain to others because

they say " well just tune it out " and you can't. I avoid the situations

most of the time, like leave the room before I get all anxious and then

bite someone's head off because the may be banging a dish or rattling a

bag, or clicking the computer mouse!

For me, my main issues have been at work and finding it hard to

concentrate when someone is chewing gum etc..

I wish som

eone could say just take this pill and it will go away, but

that has not happened yet. I have not been to this site in awhile so

maybe I missed something.

Dawn.

> Hello, my name is and I am new to this group. I am 16 and

didn't know I had misophonia until just recently, I always just thought

I was weird. I am so glad to know that I am not the only one going

through this, I just wanted to know if any of you have families or

friends that you have told about your misophonia that understand and

accommodate to your situation. I'd also like to know how you were able

to explain it to them. My family always makes fun of me when I run out

of the room if they are eating, and my friends get mad at me if I try

to walk out of the room when they eat or bite their nails. I really

hate it when they are like that and I would really appreciate any

advice on how to explain to them about this disorder. Thank you.

>

August 12, 2009

That's sort of why I haven't told any family members Lynn, even to me it sounds a strange thing to have. I was 41 years old when I found a name for 4S, and this wonderful group - prior to that I just thought I had underlying issues with my dad (my main trigger) and that he truly was an offensive eater! I wonder now.....perhaps if I didn't have 4S, my father would actually just be eating his food normally (although I doubt it, he truly does make a lot of noise!!)

I have developed another trigger, which I am at a loss to understand. My daughter brushing her teeth. Granted, we do argue a lot these days, she's 13 and of course is far more knowledgable than her mother, but lately when I hear that vigorous, noisy brushing I feel I can't cope with the noise. Why why why???? I've heard her brush her teeth since she had them, why is it only in the past few weeks that I find the sound unbearable? Is it derived from our changing relationship? Is this why we develop 4S at an age where we are changing from children into young adults? Is a changing relationship dynamic and the resultant stresses indicative of 4S?

Who knows.... right now she's in the bathroom with the door shut, because she already knows I can't stand the noise of her brushing. I feel terrible.

Adrienne

To: Soundsensitivity Sent: Wednesday, 12 August, 2009 4:18:43 PMSubject: Re: Re: New to the group

I've been in the closet for 47 years. It's great that you guys are figuring it out before I did!! Haven't had much success sharing with family, the small amount I have, and 1 friend--not a good response, just deal with it from them. Right. Hope you come through better. But no matter my age, it's good to know there are so many others out there who understand. I just hope something can help someday. Re: New to the group>Hey .At least you are 16 and realize that you are not crazy! I went for many years (probably age 10) and I am now 41, thinking there was really something about me that was not right.My husband really does not understand and kind of laughs about it. My sister and mom know a little. It is hard to explain to others because they say "well just tune it out" and you can't. I avoid the situations most of the time, like leave the room before I get all anxious and then bite someone's head off because the may be banging a dish or rattling a bag, or clicking the computer mouse!For me, my main issues have been at work and finding it hard to concentrate when someone is chewing gum etc..I wish someone could say just take this pill and it

will go away, but that has not happened yet. I have not been to this site in awhile so maybe I missed something.Dawn.> Hello, my name is and I am new to this group. I am 16 and didn't know I had misophonia until just recently, I always just thought I was weird. I am so glad to know that I am not the only one going through this, I just wanted to know if any of you have families or friends that you have told about your misophonia that understand and accommodate to your situation. I'd also like to know how you were able to explain it to them. My family always makes fun of me when I run out of the room if they are eating, and my friends get mad at me if I try to walk out of the room when they eat or bite their nails. I really hate it when they are like that and I would really appreciate any advice on how to explain to them about this disorder. Thank

you.>

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August 12, 2009

I wonder also if it was my relationship with my mother, but now I do

have to wonder if it was the sounds that made me always try to avoid

being close to her. I have to wonder if knowing about this would have

changed anything at least from my perspective. Now it seems too late.

I guess it's kind of what came first, the chicken or the egg?

As far as the new distaste of toothbrushing sounds, Adrienne, who's to

say why. I find some new triggers just come on all of a sudden like

with people on tv that perhaps I never noticed before, and all of a

sudden become intolerable. My brother has come up with some sounds now

that are driving me crazy lately. This is such a bizarre condition.

And 13 is a tough age for everybody involved, no doubt about it! Will

we ever know there is some part of it that is relationship dynamics?

Why would I develop new triggers to people I don't have a relationship

with? Too many questions, but don't blame yourself. If we could make

a choice to not be bothered, we would, so don't beat yourself up about

it. We just do the best we can--hey, at least she closes the door now.

She's a great kid from everything else you've said, and you're a

terrific mom, so try not to be so hard on yourself. The next few years

are certainly going to be tough, what with your loss of intelligence

and all:) It's just a part of the proces

s. Just hang on! It won't

last forever.

Lynn

Re: New to the group

>Hey .

At least you are 16 and realize that you are not crazy! I went for many

years (probably age 10) and I am now 41, th

inking there was really

something about me that was not right.

My husband really does not understand and kind of laughs about it. My

sister and mom know a little. It is hard to explain to others because

they say " well just tune it out " and you can't. I avoid the situations

most of the time, like leave the room before I get all anxious and then

bite someone's head off because the may be banging a dish or rattling a

bag, or clicking the computer mouse!

For me, my main issues have been at work and finding it hard to

concentrate when someone is chewing gum etc..

I wish som

eone could say just take this pill and it

will go away, but