Re: Having a hard time dealing with sound sensitivity

[Guest guest]

Hugs RandallI'm so sorry to hear the pain in your message. This whole thing sucks and somedays I want to just walk away from everything I know. Thinking of you,VickiTo: Soundsensitivity Sent: Monday, December 22, 2008 3:25:36 PMSubject: Having a hard time dealing with sound sensitivity

I don't know how to deal with this condition anymore. The demands upon

me keep increasing and I am unable to cope. I have one good day where

I'm able to handle a little more than usual and it expected of me to be

like that from now on even though I fluctuate back into bad days with

sounds. I'm exhausted from having to endure so much pain for the sake of

others and not be able to take care of myself while dealing with this

condition.

I don't know about any of you, but I have a habit and taking my

headphones and sound generators off and slapping my ears until I can

externalize the pain when the internal pain gets too overwhelming. I

have no way to reach into my ears and brain to massage the pain away.

External pain is easier to do that with.

A few things that had been helpful to me have been taken away and I'm

starting to feel like I'm hanging over the cliff with one hand painfully

hanging on. About the only thing I can do now is to become a recluse,

which in turn will upset my family. But it is the only thing I can do so

I don't have to endure so much pain.

It is one thing to cope with normal life pains, but then to have to

endure 4S and Hyperacusis on top of that can be way too much for one

person to cope with. I've been dealing with this hard core for over 20

years and it has disrupted every facet of my life.

Today has been especially bad being a grown man crying and sobbing in

private away from everyone because my ears hurt so much and everyone not

respecting that.

Thank you everyone for listening and all the help you give to this

group. It's one more light to brighten a bad day.

-Randall

[Guest guest]

Randall,

I am so sorry for the pain you are in. I can relate with the 4S part

but not the hyperacusis part. Spending time at the hyperacusis site

has opened my eyes to the fact that my 4S could be something much

worse... like hyperacusis. I'm sorry you have to deal with both. I

wish I could give you back those helpful things that have been taken

from you. I would. I know what you mean about having a good day and

then going back into bad days. I think the thing that keeps me going

is that I tell myself there has got to be another good day in my

future however far off it may be. And someday, we all will be saying

that we are having more good days then bad. That is my hope, that is

my wish for you. Try to stay strong Randall. We are all here to lend

you a hand to keep you from going over that cliff.

Darlene

>

> I don't know how to deal with this condition anymore. The demands upon

> me keep increasing and I am unable to cope. I have one good day where

> I'm able to handle a little more than usual and it expected of me to be

> like that from now on even though I fluctuate back into bad days with

> sounds. I'm exhausted from having to endure so much pain for the sake of

> others and not be able to take care of myself while dealing with this

> condition.

>

> I don't know about any of you, but I have a habit and taking my

> headphones and sound generators off and slapping my ears until I can

> externalize the pain when the internal pain gets too overwhelming. I

> have no way to reach into my ears and brain to massage the pain away.

> External pain is easier to do that with.

>

> A few things that had been helpful to me have been taken away and I'm

> starting to feel like I'm hanging over the cliff with one hand painfully

> hanging on. About the only thing I can do now is to become a recluse,

> which in turn will upset my family. But it is the only thing I can do so

> I don't have to endure so much pain.

>

> It is one thing to cope with normal life pains, but then to have to

> endure 4S and Hyperacusis on top of that can be way too much for one

> person to cope with. I've been dealing with this hard core for over 20

> years and it has disrupted every facet of my life.

>

> Today has been especially bad being a grown man crying and sobbing in

> private away from everyone because my ears hurt so much and everyone not

> respecting that.

>

> Thank you everyone for listening and all the help you give to this

> group. It's one more light to brighten a bad day.

>

> -Randall

>

[Guest guest]

Thank you for your responses, they do mean a lot to me.

It is funny, but the idea " there has got to be another good day in my

future however far off it may be " is exactly the thought that gave me

the strength to endure this condition when I was a teenager. It's just

now that I've gotten older it has become harder to endure and another

good day seems too far off in the future for it to be helpful in my

life.

About the only thing that saves me each day is going to sleep. I find

with me I do better with 10 rather than 8 hours or less. 10 hours of

sleep is normal for some people, even though they say 8 is and that

isn't really true. I have many vivid dreams every night that I remember

and in them 95% of the time I am free of 4S/Hyperacusis/Tinnitus.

Sleeping is the only time I can exist without having to endure this

condition. Strangely enough I have been having nightmares once or twice

a month lately where I do get tortured by sounds. A lot of time it is

family who is doing it and I tell them to please stop but they keep on

doing it to me anyway. I get so frustrated and angry in my dream that

I'll do anything to make the sounds stop.

I feel like I'm sitting on the cliff now this morning looking down into

the abyss. I had very nice, but odd, dreams last night that helped pull

me out of the torture of yesterday somewhat. Although, in my dreams I

didn't know how I got there and didn't know where I was going, I felt

lost. Maybe that is how I'm feeling right now: I'M LOST. I still don't

know how to deal with this condition and have some semblance of a

" normal " life at the same time. I still feel that will never happen in

my lifetime.

-Randall

[Guest guest]

Hi Randall,I've been thinking about your earlier email...feeling so much empathy towards you and wishing I could take your pain away. I know how those bad days can be and you begin to wonder what you did to deserve such severe punishment. All we can do is take one moment at a time and keep hoping for that "good day" to come. I'm so sorry that you feel like this and that there is such despair in your life when this is a time that all of us should be able to feel joy and warmth.Since mentioned the pyroluria condition I have been taking Vitamin B6 and zinc every day and I have noticed a slight improvement. The other day I went out to a cafe and one of the women working there was snipping something with scissors repeatedly. I would have

normally just kept giving her dirty looks and feeling miserable. Even though I took notice of the noise, I didn't have my usual aggressive and violent reaction.Are you taking any vitamin supplements at the moment? If not, do you want to try it an maybe see if there is any sort of change or improvement?I'm really sorry that you are going through this...I wish there was something that I could do to offer you some relief (Thinking of you.andraTo: Soundsensitivity Sent: Tuesday, December 23,

2008 6:41:58 PMSubject: Re: Having a hard time dealing with sound sensitivity

Thank you for your responses, they do mean a lot to me.It is funny, but the idea "there has got to be another good day in myfuture however far off it may be" is exactly the thought that gave methe strength to endure this condition when I was a teenager. It's justnow that I've gotten older it has become harder to endure and anothergood day seems too far off in the future for it to be helpful in mylife.About the only thing that saves me each day is going to sleep. I findwith me I do better with 10 rather than 8 hours or less. 10 hours ofsleep is normal for some people, even though they say 8 is and thatisn't really true. I have many vivid dreams every night that I rememberand in them 95% of the time I am free of 4S/Hyperacusis/Tinnitus.Sleeping is the only time I can exist without having to endure thiscondition. Strangely enough I have been having nightmares once or twicea month lately

where I do get tortured by sounds. A lot of time it isfamily who is doing it and I tell them to please stop but they keep ondoing it to me anyway. I get so frustrated and angry in my dream thatI'll do anything to make the sounds stop.I feel like I'm sitting on the cliff now this morning looking down intothe abyss. I had very nice, but odd, dreams last night that helped pullme out of the torture of yesterday somewhat. Although, in my dreams Ididn't know how I got there and didn't know where I was going, I feltlost. Maybe that is how I'm feeling right now: I'M LOST. I still don'tknow how to deal with this condition and have some semblance of a"normal" life at the same time. I still feel that will never happen inmy lifetime.-Randall------------------------------------PLEASE BE AWARE THIS IS A STRICTLY CONFIDENTIAL GROUP AND NO MESSAGES ARE TO BE USED FOR ANY PURPOSE OUTSIDE OF THE

YAHOO GROUP MEMBERSHIP SITE OR REPRODUCED OR COPIED AND MAILED FOR ANY PURPOSE. ALSO DO NOT SHARE MEMBER EMAIL ADDRESSES OR NAMES WITH ANYONE.Thank you. MJ

[Guest guest]

Hi andra,

I am taking a magnesium/zinc and Vitamin D supplements right now. I had

hoped they would help but I haven't really had any extreme change for

the better yet. I also take a multi vitamin that has B6 in it.

I seem to have days where my ears hurt a lot and trigger sounds will

elevate the pain and also trigger headaches. This can make it difficult

to focus on things. On these bad days it seems is when people need my

attention the most and so I struggle with meeting the demands on me in

addition to trying to cope with the pain. I'm usually not successful at

doing that without harm to myself.

I appreciate all of your empathy and care. I empathize with everyone in

this group too. Knowing I'm not the only one going crazy with this does

help me know I'm not alone. I agree this time of year should be one of

joy and celebration, but 4S knows no boundaries.

-Randall

[Guest guest]

Hi Randall,I take large doses of B6, I didn't notice much at 200mg but if there is a deficiency you would have to take more in order to notice something. I can't tell you how much to take but I have been increasing mine to have better dream recall. I take about 800mg now and I've noticed a HUGE improvement in remembering my dreams where I used to rarely be able to. They say that Vitamin B6 taken in P5P form (active ingredient) is much better absorbed by the body. Check the mgs that you are using and let me know. I'm curious. I take 60 mgs of zinc. I really do feel changes and feel much more in control than before.Again, I wish there was something I can do for you! I know how bad it can be when it does get bad and I can't imagine

having the 4s plus then also having physical pain. I wish you the best Randall and hope that you soon get some relief.Love,andraTo: Soundsensitivity Sent: Wednesday, December 24, 2008 1:54:19 AMSubject: Re: Having a hard time dealing with sound sensitivity

Hi andra,I am taking a magnesium/zinc and Vitamin D supplements right now. I hadhoped they would help but I haven't really had any extreme change forthe better yet. I also take a multi vitamin that has B6 in it.I seem to have days where my ears hurt a lot and trigger sounds willelevate the pain and also trigger headaches. This can make it difficultto focus on things. On these bad days it seems is when people need myattention the most and so I struggle with meeting the demands on me inaddition to trying to cope with the pain. I'm usually not successful atdoing that without harm to myself.I appreciate all of your empathy and care. I empathize with everyone inthis group too. Knowing I'm not the only one going crazy with this doeshelp me know I'm not alone. I agree this time of year should be one ofjoy and celebration, but 4S knows no boundaries.-Randall

------------------------------------PLEASE BE AWARE THIS IS A STRICTLY CONFIDENTIAL GROUP AND NO MESSAGES ARE TO BE USED FOR ANY PURPOSE OUTSIDE OF THE YAHOO GROUP MEMBERSHIP SITE OR REPRODUCED OR COPIED AND MAILED FOR ANY PURPOSE. ALSO DO NOT SHARE MEMBER EMAIL ADDRESSES OR NAMES WITH ANYONE.Thank you. MJ

[Guest guest]

Dear Randall, I am sure I speak for all of us when I say how upset we

are to read your email. we are so very sorry for your situation and

we do empathize, we have all been there or actually are there along

with you!!

You mentioned that something that helped you had recently been taken

away, was that some kind of medication?

We are all on your side in this and wish we could do something to

help. I hope just reading this comforts you in some small way.

Maybe if you get away for a few days by yourself that would be a good

thing for you. Maybe you can schedule some getaway weekends or days

every month for something to look forward to?

> me keep increasing and I am unable to cope. I have one good day

where

> I'm able to handle a little more than usual and it expected of me

to be

> like that from now on even though I fluctuate back into bad days

with

> sounds. I'm exhausted from having to endure so much pain for the

sake of

> others and not be able to take care of myself while dealing with

this

> condition.

>

> I don't know about any of you, but I have a habit and taking my

> headphones and sound generators off and slapping my ears until I can

> externalize the pain when the internal pain gets too overwhelming. I

> have no way to reach into my ears and brain to massage the pain

away.

> External pain is easier to do that with.

>

> A few things that had been helpful to me have been taken away and

I'm

> starting to feel like I'm hanging over the cliff with one hand

painfully

> hanging on. About the only thing I can do now is to become a

recluse,

> which in turn will upset my family. But it is the only thing I can

do so

> I don't have to endure so much pain.

>

> It is one thing to cope with normal life pains, but then to have to

> endure 4S and Hyperacusis on top of that can be way too much for one

> person to cope with. I've been dealing with this hard core for over

20

> years and it has disrupted every facet of my life.

>

> Today has been especially bad being a grown man crying and sobbing

in

> private away from everyone because my ears hurt so much and

everyone not

> respecting that.

>

> Thank you everyone for listening and all the help you give to this

> group. It's one more light to brighten a bad day.

>

> -Randall

>