Re: (unknown)

March 13, 2002

Hello, , or is it that you prefer to be

called Rasta? Either way, hello and welcome to the

list!

You have a lot of company here. Please jump in and

join the conversations. No one here bites! We'd love

to hear your story, and you sure will hear ours.

--- " , " wrote:

>

> Hi All

>

> My name is (Rasta). I am 47 yrs young i

> have spina bifida and tethered cord also chronic

> pain. Rasta

>

> ---------------------------------

>

March 13, 2002

Hi .

It does not matter what name i go by either or Rasta i have answered to alot worse haha.

i'll tell u alittle bit about myself i have known since iwas 18 that i had spina bifida occulta but i lived a normal life with just a few complaints about my back hurting that was up until 1998 then it got a lot worse it might have been from my job but i do not think so i was a long haul truck driver. iwent to see my neurosurgeon who had retired so i had to see his replacement who scoffed at my pain but sent me for an mri which took 6 months to get when i went back to see him he told me i had tethered cord and had to have an op right away so had op in nov 98over xmas had lot of pain and swelling with alot of fluid in the backwent back to see him in jan and had to have another op in jan99 to fix a leak when i went for my mri 4 weeks after op i was already retethered so another op to make long story shorter had 4 ops in 2 years and i am still tethered and they will not do another op said it is too dangerous now bladder and bowels are starting to give me problems after last operation i started to get a bump the size of an apple on one of my buttocks and nobody agrees on what it is some say fatty tissue others say fluid so i am going for a ultra sound on it they do not know how they are going to do it but are willing to try because it is very painfull. on top of all that i am having to fight for disability because my doctor will not let me go back to work. So if anbody out there can give me any info on bump it would be very much appreciated. Rasta

March 28, 2002

Hi.

I do kinda, i get them in my neck when i walk. It's kinda like a crackin

gor popping when i walk. Have not gotten them in my back, but i'm sure i

will sooner or later. I think its a vertibre out of place or something but

i dont know

>

>Reply-To: tetheredspinalcord

>To: tetheredspinalcord

>Subject: (unknown)

>Date: Thu, 28 Mar 2002 03:07:28 -0000

>

>Hello,

> Dose anyone have popping sounds in the back when moving around?

>Is like when you crack you fingers. My back has been doing this for a

>few days now. Thanks stephanie

>

_________________________________________________________________

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February 11, 2009

What lab performed the test? Because I'm guessing it was Quest or Labcorp because of the lack of bands shown? I wouldn't put this to bed just yet because he has a 18 band showing, although it is IgG which indicates a past infection. He does have 41 band which CAN be Lyme or a whole host of viruses as well. I would recommend a provocation and then a retest with IgeneX before we say it's a negative.

Hope that helps.

Tami

he only tested IND on 41** IgmThe results I sent were IgG:18 +**31 IND**34 IND** 41 ++

February 11, 2009

would the low dose ABX he takes be inhibiting the results, and what would

provoke a test

if it were Lyme

>

> What lab performed the test? Because I'm guessing it was Quest or Labcorp

because of

the lack of bands shown? I wouldn't put this to bed just yet because he has a

18 band

showing, although it is IgG which indicates a past infection. He does have 41

band which

CAN be Lyme or a whole host of viruses as well. I would recommend a

provocation and

then a retest with IgeneX before we say it's a negative.

> Hope that helps.

>

> Tami

>

> In a message dated 02/11/09 06:11:59 Pacific Standard Time, theshannster2@...

writes:

> he only tested IND on 41** Igm

> The results I sent were IgG:

> 18 +

> **31 IND

> **34 IND

> ** 41 ++

>

February 11, 2009

This may give you more information on provocation, it usually would take a higher dose. A low dose may inhibit, but I'm not a doctor so I can't say for sure.

http://www.lymeinducedautism.com/howtogettested.html

would the low dose ABX he takes be inhibiting the results, and what would provoke a test if it were Lyme>> What lab performed the test? Because I'm guessing it was Quest or Labcorp because of the lack of bands shown? I wouldn't put this to bed just yet because he has a 18 band showing, although it is IgG which indicates a past infection. He does have 41 band which CAN be Lyme or a whole host of viruses as well. I would recommend a provocation and then a retest with IgeneX before we say it's a negative.> Hope that helps.> > Tami> > > > In a message dated 02/11/09 06:11:59 Pacific Standard Time, theshannster2@.... writes:> he only tested IND on 41** Igm> The results I sent were IgG:> 18 +> **31 IND> **34 IND> ** 41 ++>

May 8, 2009

Twice in my life I have had to take anti-depressants (oh the joy of PND). Both times the medication did nothing to relieve the 4S.

When I was at school I was social, always had a great group of friends - but found it hard to mix with new groups of people. I didn't make friends easily. Even today i have very few close friends. I would like to think that a lot of people would describe me as a friendly person, but I feel I'm always reserved - I'm friendly but don't open up and invite close friendships into my life. Honestly, I am perfectly happy on my own. I don't feel a huge desire to be surrounded by friends. My sister always has huge numbers of friends, always very social, even at school. I was the opposite and preferred a few very close friends to a large number.

I think it is easier to form friendships at school and when younger, because you're forced into interaction with them every single day. When you're older you must make an effort to maintain contact with people - maybe this is why I have fewer friends as I get older. I can go years without even speaking to someone - I think of them sometimes, but never feel this overwhelming desire to catch up or see people.

Guess I just really enjoy my own company! I'm sounding anti-social, and I can assure you I'm not - just happy to be on my own, or with my children.

Adrienne

To: Soundsensitivity Sent: Saturday, May 9, 2009 12:30:49 PMSubject: (unknown)

I find all of this very interesting. Here are my thoughts. My 12 yr old daughter has been diagnosed with sensory processing disorder. She also has panic/anxiety disorder which she is on medication for. We have done listening therapy and also therapy for her vestibular system. One psychiatrist mentioned Aspergers and asked about her social life. My daughter is very social but what I find interesting is my very dear friend has always told me that my daughter was different socially than other friends that her daughter plays with. I must mention that my friend's son has autism. She has done a ton of research and works very closely with hospitals, OT's, schools, etc... I'm not saying I believe that my daughter has this but it does cross my mind. I also want to mention that I have OCD/anxiety/ depression. I do not know of anyone else who has 4s in the family. So, the

question is, are all of these related in some way. My gut says yes. Why hasn't anything worked for 4s, yet meds work for anxiety and my OCD. Also, I question whether or not meds really cure it. I don't think so. I will still have my days I'm overly anxious and same with my daughter and we are both on meds. But if either of us do not take it then we are definately worse. We just need to find something that will "relieve" 4s. I think this group is going in the right direction in finding that.

May 13, 2009

This girl that works with me, she can chew, pop gum and talk loudly at the same

time. She must think is a talent and feel proud of it because she does it

often. How horrible! Yesterday, as she always does, come often to chat with my

neighbor and I was on the phone with a customer (and this is a government

agency) and she loudly said " I am going home " and repeated 3 times loudly. My

cubicle neighbor also has some pretty disgusting habits and then claims that

other people have habits that bother her. I can't help but laugh in disbelief.

Hang in there!

Waleska

> >People with Asperger syndrome may have sensory difficulties. These can

occur in one or all of the senses (sight, sound, smell, touch, or taste). The

degree of difficulty varies from one individual to another. M ost commonly, an

individual's senses are either intensified (over-sensitive) or underdeveloped

(under-sensitive) . For example, bright lights, loud noises, overpowering

smells, particular food textures and the feeling of certain materials can be a

cause of anxiety and pain for people with Asperger syndrome.

>

> >What do you all think?

>

> >, x.

>

May 16, 2009

Question on sleeping with earplugs: Do you have trouble hearing an alarm clock that way? Right now I'm sleeping with noisy air cleaners, fans, and when the power goes out, I'm wide awake within 15 minutes and cannot sleep in silence. Strange! But I'd worry about not hearing the alarm. Is that ever a problem?

(unknown)

Hi Jo,

Welcome to the group. I too have suffer from this condition 15 years+. What is helping me is finding some outlets. I have tried to get use to the sounds or noises by exposing myself to them and it has made it worse. I think it is acceptable to remove yourself from the situation as needed and when possible.

My biggest challenge is at work where I work with very belligerent people and they don't respect even with regards to noises that would disrupt the work of even any "normal" individual. I have given up with this place and found another job, which I will be transferring within this month.

I sleep with earplugs and use my Ipod at work to block noises when possible.

Hang in there!

Waleska

>

> Hi to all,

> I am Jo, new to your group. I would like to share my experience of my intolerance to certain noises and more recently repetitive movements or habits of others.

> I had never realised this could be a medical condtion from which I have been dealing with since age 11.

> At first as a youngster I was unable to sit at the dinner table because I had these feelings of rage whilst trying to blot out the sound of my father eating and his really heavy nasal breathing.

> I have blamed myself for years and years and indeed my parents did too. Often I had arguments with them. I stormed off upstairs out of the way and from then on I took my meals in my room.

> I feel a whole lot of guilt because it is time wasted on what should be an enjoyable part of life which I can never regain. I don't harbour bad feelings towards my father and wished I could tolerate it better.

> I still have a lot

of problems in this area and I think that over the years it has progrssed.

> I have found recently that I can eat with my own family providing I have the cooker hood fan on. I always feel quite panicky around meal times but when we get stuck in and start conversation it helps to divert my attention away from the sounds that cause me problems.

> Would be pleased to hear from you especially if you have strategies that help you.

> Regards

> Jo

>

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May 16, 2009

Thanks, Adrienne,

I swear through all the noise going on in my room I can "feel" my mother's tv set through the walls (duplex) even though she's on the opposite end of the house. It's almost like a sensation instead of hearing. You mentioned that you're losing some of your hearing, and I'm curious if that dulls any of your triggers? Does it help at all or just make for more frustration in other areas?

Lynn

(unknown)

Hi Jo,

Welcome to the group. I too have suffer from this condition 15 years+. What is helping me is finding some outlets. I have tried to get use to the sounds or noises by exposing myself to them and it has made it worse. I think it is acceptable to remove yourself from the situation as needed and when possible.

My biggest challenge is at work where I work with very belligerent people and they don't respect even with regards to noises that would disrupt the work of even any "normal" individual. I have given up with this place and found another job, which I will be transferring within this month.

I sleep with earplugs and use my Ipod at work to block noises when possible.

Hang in there!

Waleska

>

> Hi to all,

> I am Jo, new to your group. I would like to share my experience of my intolerance to certain noises and more recently repetitive movements or habits of others.

> I had never realised this could be a medical condtion from which I have been dealing with since age 11.

> At first as a youngster I was unable to sit at the dinner table because I had these feelings of rage whilst trying to blot out the sound of my father eating and his really heavy nasal breathing.

> I have blamed myself for years and years and indeed my parents did too. Often I had arguments with them. I stormed off upstairs out of the way and from then on I took my meals in my room.

> I feel a whole lot of guilt because it is time wasted on what should be an enjoyable part of life which I can never regain. I don't harbour bad feelings towards my father and wished I could tolerate it better.

> I still have a lot

of problems in this area and I think that over the years it has progrssed.

> I have found recently that I can eat with my own family providing I have the cooker hood fan on. I always feel quite panicky around meal times but when we get stuck in and start conversation it helps to divert my attention away from the sounds that cause me problems.

> Would be pleased to hear from you especially if you have strategies that help you.

> Regards

> Jo

>

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May 16, 2009

Hi Lynn, no unfortunately it doesn't dull any of the triggers!

The hearing loss is at the point where I'll need to get hearing aids soon, but I can still "hear" noise. My parents were over yesterday, and from a few rooms away I could still hear my father's eating. Maybe it's because I don't need to hear specific noises and tones with what he does, it's just a general sort of noise. Whereas with speech unless someone is talking right to me, it's hard to discern words immediately, especially if they're speaking rapidly. Sometimes I have to think about what's being said before I can answer them (dead giveaway I can't hear well) but most of the time I have to get them to repeat what they've said. Pitch of voice also makes a difference.

Gum chewing, general eating, all of that is still a hassle for me. I still hear it, and see the jaw movement, and that in itself gets me anxious.

Rubber bands - well, as I'm the only person on here who has them as a trigger, I can say that just looking at one makes me upset, but unfortunately I can still hear the noise, even if it is subtle, and that always sets me off.

The thing with hearing loss is it isn't entirely like a volume control going down in your ears. It starts as being unable to hear people speak proper words with noise around - you can hear them making noise, but not understand the actual words. It also starts with being unable to speak to people in the car with the radio on. It starts with turning the tv up louder because there is often noise in the background of speech, and you can't separate the speech from the general noise. I am still at that point where noise blends in together, and speech tends to be lost in any background noise. I also realised the other day that I'm looking at people's mouths when they speak, something which I've never done before in my life.

My daughter ate dinner next to me tonight and her eating noises were really getting on my nerves. She tries to eat quietly and she knows about 4S so I didn't say much, but it upset me to the point that I left the room under the pretence of getting dessert ready. That upsets me - that I can't even stay with her whilst she's eating. But my eating gets on her nerves too, so we learn to cope with each other. But even with background noise I could still hear her eating! Perhaps this is because we listen out for the noise, because we have conditioned ourselves to be prepared for the anxiety it causes.

Hope this makes sense,

Adrienne

To: Soundsensitivity Sent: Saturday, May 16, 2009 9:39:23 PMSubject: Re: (unknown)

Thanks, Adrienne, I swear through all the noise going on in my room I can "feel" my mother's tv set through the walls (duplex) even though she's on the opposite end of the house. It's almost like a sensation instead of hearing. You mentioned that you're losing some of your hearing, and I'm curious if that dulls any of your triggers? Does it help at all or just make for more frustration in other areas?

Lynn

(unknown)

Hi Jo, Welcome to the group. I too have suffer from this condition 15 years+. What is helping me is finding some outlets. I have tried to get use to the sounds or noises by exposing myself to them and it has made it worse. I think it is acceptable to remove yourself from the situation as needed and when possible. My biggest challenge is at work where I work with very belligerent people and they don't respect even with regards to noises that would disrupt the work of even any "normal" individual. I have given up with this place and found another job, which I will be transferring within this month. I sleep with earplugs and use my Ipod at work to block noises when possible. Hang in there!Waleska>> Hi to all,> I am Jo, new to your group. I would like to share my experience of my intolerance to certain noises and more recently repetitive movements or habits of others.> I had never realised this could be a medical condtion from which I have been dealing with since age 11.> At first as a youngster I was unable to sit at the dinner table because I had these feelings of rage whilst trying to blot out the sound of my father eating and his really heavy nasal breathing.> I have blamed myself for years and years and indeed my parents did too. Often I had arguments with them. I stormed off upstairs out of the way and from then on I took my meals in my room.> I feel a whole lot of guilt because it is time wasted on what should be an enjoyable part of life which I can never regain. I don't harbour bad feelings towards my father and wished I could tolerate it better.> I still have a lot

of problems in this area and I think that over the years it has progrssed.> I have found recently that I can eat with my own family providing I have the cooker hood fan on. I always feel quite panicky around meal times but when we get stuck in and start conversation it helps to divert my attention away from the sounds that cause me problems.> Would be pleased to hear from you especially if you have strategies that help you.> Regards> Jo>

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May 16, 2009

I don't actually sleep with earplugs on, but I can't really hear anything when

I'm asleep anyway.. I bought a vibrating alarm clock a few years ago that clips

onto the pillow. That one always works.

Rather than buy a fancy alarm clock though, most cell phones can be set to play

music and/or vibrate as an alarm.

> >

> > Hi to all,

> > I am Jo, new to your group. I would like to share my experience of my

intolerance to certain noises and more recently repetitive movements or habits

of others.

> > I had never realised this could be a medical condtion from which I have been

dealing with since age 11.

> > At first as a youngster I was unable to sit at the dinner table because I

had these feelings of rage whilst trying to blot out the sound of my father

eating and his really heavy nasal breathing.

> > I have blamed myself for years and years and indeed my parents did too.

Often I had arguments with them. I stormed off upstairs out of the way and from

then on I took my meals in my room.

> > I feel a whole lot of guilt because it is time wasted on what should be an

enjoyable part of life which I can never regain. I don't harbour bad feelings

towards my father and wished I could tolerate it better.

> > I still have a lot

> of problems in this area and I think that over the years it has progrssed.

> > I have found recently that I can eat with my own family providing I have the

cooker hood fan on. I always feel quite panicky around meal times but when we

get stuck in and start conversation it helps to divert my attention away from

the sounds that cause me problems.

> > Would be pleased to hear from you especially if you have strategies that

help you.

> > Regards

> > Jo

> >

>

May 16, 2009

Welcome Jo!

(unknown)

Hi Jo! I just wanted to extend a warm welcome to you! I completely relate to your story. My father was my first trigger at the dinner table around age 12. I too used to eat in my room. I hope you can find some help here! >> Hi to all,> I am Jo, new to your group. I would like to share my experience of my intolerance to certain noises and more recently repetitive movements or habits of others.> I had never realised this could be a medical condtion from which I have been dealing with since age 11.> At first as a youngster I was unable to sit at the dinner table because I had these feelings of rage whilst trying to blot out the sound of my father eating and his really heavy nasal breathing.> I have blamed myself for years and years and indeed my parents did too. Often I had arguments with them. I stormed off upstairs out of the way and from then on I took my meals in my room.> I feel a whole lot of guilt because it is time wasted on what should be an enjoyable part of life which I can never regain. I don't harbour bad feelings towards my father and wished I could tolerate it better.> I still have a lot of problems in this area and I think that over the years it has progrssed.> I have found recently that I can eat with my own family providing I have the cooker hood fan on. I always feel quite panicky around meal times but when we get stuck in and start conversation it helps to divert my attention away from the sounds that cause me problems.> Would be pleased to hear from you especially if you have strategies that help you.> Regards> Jo>

May 16, 2009

(wince) Oh no, I hear the alarm just fine.= M-F.>Question on sleeping with earplugs: Do you have trouble hearing an alarm clock that way? Right now I'm sleeping with noisy air cleaners, fans, and when the power goes out, I'm wide awake within 15 minutes and cannot sleep in silence. Strange! But I'd worry about not hearing the alarm. Is that ever a problem?

May 16, 2009

Hi, Adrienne,

Yes, thanks. That's the best explanation of hearing loss I've ever heard. You really have a way of saying things to make everything clear. Really helped clarify things and what my mother and a friend are going through. Thanks so much. You have a definite gift!

Lynn

(unknown)

Hi Jo,

Welcome to the group. I too have suffer from this condition 15 years+. What is helping me is finding some outlets. I have tried to get use to the sounds or noises by exposing myself to them and it has made it worse. I think it is acceptable to remove yourself from the situation as needed and when possible.

My biggest challenge is at work where I work with very belligerent people and they don't respect even with regards to noises that would disrupt the work of even any "normal" individual. I have given up with this place and found another job, which I will be transferring within this month.

I sleep with earplugs and use my Ipod at work to block noises when possible.

Hang in there!

Waleska

>

> Hi to all,

> I am Jo, new to your group. I would like to share my experience of my intolerance to certain noises and more recently repetitive movements or habits of others.

> I had never realised this could be a medical condtion from which I have been dealing with since age 11.

> At first as a youngster I was unable to sit at the dinner table because I had these feelings of rage whilst trying to blot out the sound of my father eating and his really heavy nasal breathing.

> I have blamed myself for years and years and indeed my parents did too. Often I had arguments with them. I stormed off upstairs out of the way and from then on I took my meals in my room.

> I feel a whole lot of guilt because it is time wasted on what should be an enjoyable part of life which I can never regain. I don't harbour bad feelings towards my father and wished I could tolerate it better.

> I still have a lot of problems in this area and I think that over the years it has progrssed.

> I have found recently that I can eat with my own family providing I have the cooker hood fan on. I always feel quite panicky around meal times but when we get stuck in and start conversation it helps to divert my attention away from the sounds that cause me problems.

> Would be pleased to hear from you especially if you have strategies that help you.

> Regards

> Jo

>

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May 16, 2009

Thanks Lynn! I've just learnt the hard way that what people assume is not what actually happens.

It took 10 years for my dad, my aunt, my grandfather etc to lose their hearing completely (they all started going deaf around 40, same as me). So I know it's going to take another 7-8 years before I can't hear much at all. I sort of knew what to expect as my father has prepared me, although my brother, sister and I always hoped against hope we wouldn't inherit the family deafness. As the nerves get progressively damaged, the hearing deteriorates. Right now it's like wearing ear plugs - you can still hear noise when people talk, but unless they're talking right to you, it doesn't make any sense.

I'm really embarrassed at the thought of wearing hearing aids (!) so will invest in those tiny little ones that hopefully won't detract too much from "fading beauty"!! (according to my charming 13 year old)

Adrienne

To: Soundsensitivity Sent: Sunday, May 17, 2009 1:25:51 PMSubject: Re: (unknown)

Hi, Adrienne, Yes, thanks. That's the best explanation of hearing loss I've ever heard. You really have a way of saying things to make everything clear. Really helped clarify things and what my mother and a friend are going through. Thanks so much. You have a definite gift!Lynn (unknown)

Hi Jo, Welcome to the group. I too have suffer from this condition 15 years+. What is helping me is finding some outlets.. I have tried to get use to the sounds or noises by exposing myself to them and it has made it worse. I think it is acceptable to remove yourself from the situation as needed and when possible. My biggest challenge is at work where I work with very belligerent people and they don't respect even with regards to noises that would disrupt the work of even any "normal" individual. I have given up with this place and found another job, which I will be transferring within this month. I sleep with earplugs and use my Ipod at work to block noises when possible. Hang in there!Waleska>> Hi to all,> I am Jo, new to your group. I would like to share my experience of my intolerance to certain noises and more recently repetitive movements or habits of others.> I had never realised this could be a medical condtion from which I have been dealing with since age 11.> At first as a youngster I was unable to sit at the dinner table because I had these feelings of rage whilst trying to blot out the sound of my father eating and his really heavy nasal breathing.> I have blamed myself for years and years and indeed my parents did too. Often I had arguments with them. I stormed off upstairs out of the way and from then on I took my meals in my room.> I feel a whole lot of guilt because it is time wasted on what should be an enjoyable part of life which I can never regain. I don't harbour bad feelings towards my father and wished I could tolerate it better.> I still have a lot

of problems in this area and I think that over the years it has progrssed.> I have found recently that I can eat with my own family providing I have the cooker hood fan on. I always feel quite panicky around meal times but when we get stuck in and start conversation it helps to divert my attention away from the sounds that cause me problems.> Would be pleased to hear from you especially if you have strategies that help you.> Regards> Jo>

A Good Credit Score is 700 or Above. See yours in just 2 easy steps!

May 17, 2009

Lynn... I'm the same way. I have an air purifier in my bedroom and I also

listen to a cd of crickets(and other midwest bugs)chirping. Like you said, if

the power goes off... I wake up immediately. I can't sleep in silence at all!

I actually can't sleep with earplugs in either... too quiet. I know that sounds

so weird! Plus I can hear myself breathe and though it doesn't bother me like a

trigger sound I can't seem to fall asleep that way. In times when the power

shuts off for extended time, I grab my iPod and listen to my crickets that way.

LOL. However, I've slept right through my alarm that way twice. Not good when

you need to get to work. :/

>

> Question on sleeping with earplugs:? Do you have trouble hearing an alarm

clock that way?? Right now I'm sleeping with noisy air cleaners, fans, and when

the power goes out, I'm wide awake within 15 minutes and cannot sleep in

silence.? Strange!? But I'd worry about not hearing the alarm.? Is that ever a

problem?

>

May 17, 2009

Hey, Darlene, Yes, sleeping through the alarm would not be good! I've always felt weird with needing noise at night. I once had to go over to my mom's in the middle of the night for something. My brother and she were sound asleep and there was just dead silence. There is no way! I'd go nuts. But it's good to know I'm not alone -- you're out there!

Re: (unknown)

Lynn... I'm the same way. I have an air purifier in my bedroom and I also listen to a cd of crickets(and other midwest bugs)chirping. Like you said, if the power goes off... I wake up immediately. I can't sleep in silence at all! I actually can't sleep with earplugs in either... too quiet. I know that sounds so weird! Plus I can hear myself breathe and though it doesn't bother me like a trigger sound I can't seem to fall asleep that way. In times when the power shuts off for extended time, I grab my iPod and listen to my crickets that way. LOL. However, I've slept right through my alarm that way twice. Not good when you need to get to work. :/

>

> Question on sleeping with earplugs:? Do you have trouble hearing an alarm clock that way?? Right now I'm sleeping with noisy air cleaners, fans, and when the power goes out, I'm wide awake within 15 minutes and cannot sleep in silence.? Strange!? But I'd worry about not hearing the alarm.? Is that ever a problem?

>

A Good Credit Score is 700 or Above. See Yours in Just 2 Easy Steps!

May 17, 2009

Thank you for your warm welcome! Have you found out from anyone how this problem is solved?? I feel ike my situation is getting worse everyday!

Subject: (unknown)To: Soundsensitivity Date: Saturday, May 16, 2009, 5:30 AM

Hi Jo! I just wanted to extend a warm welcome to you! I completely relate to your story. My father was my first trigger at the dinner table around age 12. I too used to eat in my room. I hope you can find some help here! >> Hi to all,> I am Jo, new to your group. I would like to share my experience of my intolerance to certain noises and more recently repetitive movements or habits of others.> I had never realised this could be a medical condtion from which I have been dealing with since age 11.> At first as a youngster I was unable to sit at the dinner table because I had these feelings of rage whilst trying to blot out the sound of my father

eating and his really heavy nasal breathing.> I have blamed myself for years and years and indeed my parents did too. Often I had arguments with them. I stormed off upstairs out of the way and from then on I took my meals in my room.> I feel a whole lot of guilt because it is time wasted on what should be an enjoyable part of life which I can never regain. I don't harbour bad feelings towards my father and wished I could tolerate it better.> I still have a lot of problems in this area and I think that over the years it has progrssed.> I have found recently that I can eat with my own family providing I have the cooker hood fan on. I always feel quite panicky around meal times but when we get stuck in and start conversation it helps to divert my attention away from the sounds that cause me problems.> Would be pleased to hear from you especially if you have strategies that help you.> Regards>

Jo>

May 21, 2009

Hey, Martha,

No, you're not the oldest. I've got 2 years on you, but emotionally, still a teenager:)

(unknown)

I've been reading this web site for about a year but have never joined in. I hope this is responding to the right email - from (about digging her fingernails into her ankle). I think I may be the oldest one so far - I'm 56. I've had this since I was about 8 - at least that's when it started - and it's gotten worse - sorry to say. My father was my first trigger and when I was little I used to scratch and bite my arms and pull my hair - never to the point of drawing blood but I would leave marks. So I know what you mean. I'm not embarrased about it anymore and that has gotten better. Probably because I have more control about getting away from my triggers than I did when I had no choice but to figure out some way of dealing with it.

As so many of you have said I thought I was alone with this disability.. That's what I have strated to call it since it has had such an effect on my life. Although I wouldn't wish this on anybody it's really a comfort to know that I'm not insane.

And just a comment about the CBT. I've been in some type of therapy on and off since I was 16. The 4S is always want sent me to therapy and while I benefited from most of it it has had absolutely no effect of the 4S.

At last, a great mobile device for under $50. Take a Peek!

May 22, 2009

Hi Martha, glad you are here. Having this disability affects every facet

of my life like it does yours. It is so hard to explain or prove what I

deal with having this condition. I find that if you don't have a

'recognized' disability then you can't get the help you need, unless you

are fortunate, which I'm not, to have lots and lots of money to pay lots

and lots of doctors and people to try and find help for this.

We are constantly under stress from dealing with this condition every

single day of our lives and that is not healthy. I find that I have to

be in solitude most of my time in order to be able to cope and not feel

like I want to die. Part of my solitude is to wear headphones all the

time to help reduce the amount of triggers that reach me. Otherwise I

spend most of my time in a single room where I can lock the door and be

alone.

The thing I like about computers is that you can modify the sound that

comes through it. For example I have the treble turned down as far as it

can go. That helps to lesson the harshness of voices and sounds. Also,

if you use a low fidelity (lo-fi) as apposed to a high fidelity (hi-fi)

that also helps to smooth voices and sounds out.

May 22, 2009

Hi, Randall,

Where do I find lo fi as opposed to hi fi or what do I have to do to get it? (Not that computer bright but work on one a lot:)