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Marilyn

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Reply with quote  #1 

Hyperacusis drastically altered my life.  Like some of you, in the twinkling of an eye, I went from being a busy, active person to someone who is unable to do ‘normal’ activities because of sound sensitivity.  My question is:  Is there a good way to help people understand the debilitating aspects of hyperacusis without sounding whiny? 

It seems even those in my own household minimize the loneliness and isolation I feel.  I get out to run errands once or twice a week.  I look fine, so no one knows what my life is like.  I’ve had a huge setback lately, and that alone is depressing.  I’m usually able to stay pretty positive about my recovery and not let the isolation get to me.  Not this time.  I’d like a little more understanding and compassion from my family. 

Please share ideas you’ve used in communicating with your friends and family the social isolation of hyperacusis.  Thanks.


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aQuieterBreeze

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Reply with quote  #2 
Hi Marilyn,

You mentioned -
I’ve had a huge setback lately, and that alone is depressing.  I’m usually able to stay pretty positive about my recovery and not let the isolation get to me.  Not this time.

Setbacks can be very difficult - and I think these challenges can be hard and/or confusing   to understand at times - in part because of the back and forth nature of things .....
how we can be doing well or pretty well, and then wind up so much more sensitive to sound again. May I ask what happened and how long ago?
I noticed you had not been posting for awhile, and wondered why.....

It's good to see you back here, and hopefully something someone can say will be helpful.

Remember the progress you have seen (actually heard)
think about the others around here, who have been through very difficult times, and are doing much better now. Setbacks can be difficult but even the very difficult ones I have had- have faded away......

Take it easy, don't be too hard on yourself, and treat yourself well....
you have been through alot. and to be going through a setback on Mother's Day,
sounds like no fun at all. Maybe you can make plans with your family to do something special, for when YOU Are feeling better,
to go out and do something special....even if it is for a picnic in a quiet park....someplace YOU will likely be able to tolerate the sound level, and be able to enjoy, and relax ......think of something that would bring you a smile -
where the sound levels would not be too difficult - for when you are feeling better...

Hope you feel much better soon.
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Johnloudb

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Reply with quote  #3 

I understand how difficult it is to make family understand. Hyperacusis and phonophobia are very selfish and unfair health problems and require one to do what's nessary to get better ... pretty much regardless of anything else. I know when I tried to meet the demands of my family when going out, or trying to keep appointments with therapists and stuff, things started going backwards and I suffered some big setbacks.

Others tend to feel I'm the selfish one, for not trying to do what they think I should be doing. Not so much now. My parents do understand now that I can't force things ... but it took some time.

Maybe, you could tell them that if you don't take care of you, things will go backwards and you'll just end up doing even less.


Wish you happier days soon.

John

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Johnloudb

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Reply with quote  #4 
Sometimes when my parents were giving me a hard time, I'd get upset and threaten to just leave or kill myself, and then they would back off and leave me alone. Though, it'd backfire sometimes when they didn't seem to care and that made me feel worse.

Don't know if that's a good suggestion for others, but it got my parents to take me seriously sometimes.

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saab1216

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Reply with quote  #5 
It is a difficult thing to constantly remind those around you of your limitations. I find people want to share their stories  great plans they have which usually include concerts,movies,parties etc. it is very disconnecting to be part of everything but never fully part. I guess I consider myself fortunate to do what things I can do right now. When I am able to have a normal conversation without misophonia ruining it,I get so thankful. These times are so rare though and many times are a discouragement to me and my loved ones. I wish I had the answers.  
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pattiluv

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Reply with quote  #6 
dear marilyn,

like you, i had my world "blown away" in the blink of an eye... and it has been at times very challenging, painful, scary, and isolating. not to mention humbling, embarrassing, ... the list goes on and on.

i don't think other people can always really understand the facts of h if they haven't been here, try as they might.

but i do think every one has the same basic human needs (peace, harmony, ease, security, etc), and can relate to basic human feelings (happy, sad, scared, hopeful, etc). everyone. lovers, parents, kids, friends, even "enemies". so there is always a way to communicate in a common language of feelings and needs.

my closest companions in life have all studied compassionate communication. you can learn more about this at http://www.cnvc.org/ -- when the going gets tough, we switch to that. it's a "common language".

so, if you are feeling (i am making this up) "sad because you have a need for connection (or respect or whatever)", someone will understand that. they will also often hear you better if you make a small "doable" request . ("would you be willing to turn down the music, or come over sometime for tea... etc."). this helps them channel the anxiety they might feel hearing you express where you're at. you let them know a simple thing that they can do for you.

i find that people can often hear feelings, needs, and small requests (and your small offers) better than they can an explanation of what h is ...

and interesting side note... so many people have issues we can't imagine or understand. even if we think they have their life together! so using this type of communication helps be a better listener as well as a better communicator of what you are wanting and needing.


warmly,
pattiluv


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Marilyn

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Reply with quote  #7 
Thanks everyone for your kind replies. 

Thank you, Patti, for the NVC link.  I looked it over and will read it thoroughly soon.

Breeze, You asked about my setback.  I began having global hypersensitivity.  I feel it's related to the wearable sound generators.  Now I can identify with John and his problems with global hypersensitivity.  My time on the computer is now limited, and have discontinued the wsg's for now.



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aQuieterBreeze

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Reply with quote  #8 
Hi Marilyn,

Thank you for your reply.
I can see where counting on being able to use the wearable sound generators, and having them seem to be too difficult to tolerate in some way,  would be a real let down in itself. Even aside from your setback.
I'm curious about what your clinician says about it?

Not everyone can tolerate the wearable sound generators. And there are people who are doing much better than they were at one time, even though they have not used them, but have used other methods to improve.

From what you have said previously  it sounds like you have a very good clinician, and hopefully your clinician will work with you to find the ways forward, that are right for You. Though the wearable gens are convenient for those who are able to tolerate them, in my view and from what i have read - there are other ways forward as well and they can be very helpful. It's about desensitization to sound, and not everyone has used the wearable sound generators.
I am not familiar with what you mention about global  hypersensitivity.
you mentioned -
I began having global hypersensitivity.  I feel it's related to the wearable sound generators.

Can you give us an idea of what you are experiencing? What symptoms are you noticing?

John is the only person other than you, (as I think you may have mentioned it not long back) that i have ever seen/noticed  mention global brain sensitivity on this board. (Though it is possible someone has and i have not noticed it.)
though you phrase it a little differently here -
you mentioned -
Now I can identify with John and his problems with global hypersensitivity.

And I wonder what your clinician has to say, about what you mention - about that?
(Personally, especially since i have only noticed it mentioned by one other person on this broad - I would not be really quick to jump to any conclusions about it.)

By the way -  I know of at least one person around here, who tried the wearable generators  and could not tolerate them, though she really wished she could  .....but she  did not let that stand in the way of working on improvement. And from what i can tell - she is doing a whole lot better too. And that is wonderful to see!

I hope that you feel better soon, and your clinician will help you to find the path forward that is right for you.
Whether it is with the wearable sound generators, or without them .

Wishing you much better days,
aQB

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Johnloudb

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Reply with quote  #9 

Global brain sensitivity is pretty common, and as I understand it, if sounds cause you physical problems like face burning, headaches, dizziness, and such that is also global brain sensitivity. But, I may be wrong about that.

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saab1216

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Reply with quote  #10 
That may explain why my head burns all the time...on my scalp!
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Marilyn

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Reply with quote  #11 
I'm not ignoring you guys.  I've checked in and read your posts, and will answer your questions asap, Breeze.  Probably in the morning.  I'm doing much better.  I actually had a day like 'normal' people, for a change!  Went grocery shopping.  Then took my car to the shop for a wheel alignment.  The noises at the shop were tolerable.  Took a walk, even the breeze didn't bother too much.  This afternoon, I went to my niece's house for an hours visit.  Also, did the car pool run twice with 3 kids talking in the car.  That's a total of 100 miles driving.

My head and ears are hurting now, but overall it was a great day!



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Marilyn

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Reply with quote  #12 
Quote:
Originally Posted by saab1216
That may explain why my head burns all the time...on my scalp!


Hey, Paul...here's a funny story.  A friend of mine bought some 'Nair.'  I think that's how to spell it.  You know, the stuff women use on their legs instead of shaving?

She put the new bottle of Nair in the shower.  Her husband thought it was shampoo.  He used it on his head.  The poor guy lost a lot of hair, lol.  He was bald in places and had spotty patches of hair.   I don't know about scalp burning, though. 

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mondelle

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Reply with quote  #13 
Hi Marilyn,
I am sorry to hear about your recent setback,you always seems to be a good motivator for us hear on this board,so i am sure that we will be able to cheer you up a bit.
Just remember that unless any of your family members have this condition it is extremely hard for them to be understanding and sensitive to what you are going through, they maybe  okay with you on your rare good days and that would be good if they last,but they don't and then you get lonely and depress especially after a setback.
I do not say a lot on this board but i look forward to reading what you have to say,i do not think that you are whinny,you are being honest about how you feel and most of us understands that.
I totally have no one in this country and i have severe HL/Recruitment /Off the chart T and H,I too go around doing all the things that need to be done and act friendly and all even if i am having a bad day,I tell myself that tomorrow will be better [often it is not]

The few friends that knows about my condition just tells me how bad they feel for me,but they have made no effort to read all the material that i have given them,so i have come to the conclusion that this is a subjective condition and at the end of the day you can only rely on yourself to lift you up from your depressing mood.

It had to be hard for you on Mother's Day,just draw from past memories of all the good times they will sustain you,and you are still in contact with your relatives no?

When i feel depress doing the cross words and suduko  helps me a lot and white noise of course.
I had minor surgery last Thursday and i was dreading all those beeping machines,i asked nicely to have some of them turned off and they actually accommodated me {half  of the staff had no idea what i was talking about}
So chin up Marilyn, you have better days ahead,you are strong,and you will not allow this H to control your life.
Annette

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Johnloudb

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Reply with quote  #14 

Very nice thoughts Annette! Hope things improve for you.

Quote:
I'm not ignoring you guys. I've checked in and read your posts, and will answer your questions asap, Breeze. Probably in the morning. I'm doing much better. I actually had a day like 'normal' people, for a change! Went grocery shopping. Then took my car to the shop for a wheel alignment. The noises at the shop were tolerable. Took a walk, even the breeze didn't bother too much. This afternoon, I went to my niece's house for an hours visit. Also, did the car pool run twice with 3 kids talking in the car. That's a total of 100 miles driving.

My head and ears are hurting now, but overall it was a great day!

Marilyn, glad you had great day! My ears and nerves were hurting today too, after pushing my boundaries yesterday, so I spent most of the day in bed, resting. But, feeling better tonight and doing some things like taking a short drive. 

7 years ago, when I first ventured to the dentist to have my teeth cleaned for the first time in five years, it was a bit much for me. Not the sound but just scraping on my teeth, a physical sensitivity, was a big step and hurt my nerves.  Afterward, I couldn't look at my computer for more than a about 30 seconds at a time for about a month. I just kept trying and after a month things all of a sudden got better and I could use it for 30 to 40 minutes again. It was a problem even before the dentist.  

I do much better than that now, like four or five hours a day sometimes.  I'm sure things you'll will improve for you.

Take Care,

John


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saab1216

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Reply with quote  #15 
Good to hear that you've been able to do some things normally Marilyn. I have those days that feel almost normal up until the days end when all comes pressing down again. I sure am glad that a full nights sleep put me into reset again. I laughed at the nair incident but wonder how her husband will explain it to his friends and co workers. Take care. 
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Marilyn

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Reply with quote  #16 
Wow, I'm so touched the way you all have reached out to encourage me.  Like Paul said on another thread, we're extended family to each other here.  There are so many posts, I don't know if I'll be able to reply to each one specifically.

I think it's hard for people to wrap their brain around hyperacusis.  I know that during a good spell, I even forget how bad I felt.  Annette, you said:  "...at the end of the day you can only rely on yourself to lift you up from your depressing mood."  How true! 

John, I understand about having to go to bed and rest.  My big day yesterday did me in, so I went back to bed this morning several hours after getting my son off to school.  At least we have nice beds to lay in.  Notice how I'm working on improving my attitude again after a few weeks of a terrible one?

Annette, you mentioned having a minor surgery last week.  How are you doing?  I hope you have people who can help you with meals, groceries, and things like that?

I do have a wonderful family.  My husband is very supportive.  The entire month of April was a tough one for me with the global hypersensitivity. Then, I felt left out because my husband had the week off and was busy with a music festival.  I couldn't go hear him play, and felt very isolated.  Paul knows the whole story, and has been a true friend via emails.  There are some things I very rudely brought to my husband's attention, and he's graciously agreed there are things we can do better.

I will have to continue this later, and get off the computer for now. 

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saab1216

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Reply with quote  #17 

Today I woke with soreness on my scalp and back of my shoulders.Ears very sensitive today with poor dynamic range.I also have neck issues.I know that I have pinched nerves in my neck but dont know if this is causing all of my hearing and pain woes.It seems to travel around my upper head and shoulder region. Is this global sensitivity?

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Marilyn

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Reply with quote  #18 
Hi Paul,
I don't know exactly the range of global hypersensitivity symptoms are.  I wish there was more information available about the subject and how it relates to hyperacusis.  I know the eye/ brain/ ear/ nerves are all closely related.  We sure need more knowledge of exactly what's happening.  You're going through a bad spell, that's for sure.  Do you know what started the setback? 

Breeze, you asked about my global hypersensitivity.  It coincided about the time I started wearing the sound generators, so I suspect that I began wearing them too long a time for me? 

It began with sort of a strobe light feeling in my head.  As though I'd been in a room with strobe lights and when I closed my eyes, I could still 'see' the lights.  Kind of a twirling sensation in my head.  A dizziness that's different than any other I've experienced.  It's not a balance dizziness, more of a head/eye dizziness. 

There's also light sensitivity.  I made the mistake of texting my daughter quite a while at night while laying in bed during the time I was having the other problems. The contrast of the cell phone light in the dark room and looking closely at the screen may have triggered more problems with light sensitivity.  My telephoning is more limited to business calls, so texting and emailing is the way I 'talk' to my family and a few friends each day.

The next day, I was so bothered by light, I had to keep the house dark with the mini blinds closed.  Typing on the computer was hard.  Looking at the monitor was bright, and the typing movement was too spinning, even though I'd type with my eyes closed.  The light sensitivity lessened after a few days, though it still hasn't completely left.  Some days are better than others.

I know, all this sounds very strange.  It does to me, even as I write.

At first, my doctor advised me to stay off the sound generators for a month, and we'd begin again at a slower pace.  She's not had a patient as difficult as me.  Of course, leave it to me to be a problem patient.

Today, I'm having a bad day of head spinning, though not as extreme as before.  I texted a lot this morning, so that may be to blame.  You'd think I'd learn, but here I am on the computer, and that's a trigger as well.

I've made an appointment with Dr. Robb in Phoenix, who is an oto-neurologist.  I had to reschedule my appointment, so it's in June.  I'm sure he'll be able to advise how to continue with my very difficult case.




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mondelle

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Reply with quote  #19 
Thanks so much for asking Marilyn,I really do not have anyone to help me with those things it would have been nice but i just find ways to adjust and i had planned ahead.In any case  where are friends when you need them?
Our brains have been altered,but to the general public we look and act normal so no one can imagine how much suffering we are going through.
Well you sounds as though you are bouncing back again,and it is good that you have your family close. 
Take things easy.
You also John,you seems to be more accepting of your condition to the point where you can give sound and rational help to others.
Keep the faith.
Annette

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Marilyn

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Reply with quote  #20 
Annette, Last week I was down in the pit of despair from this set back.  I think we all deal with grief over the losses hyperacusis causes in our lives.  My goal here on the message board is to be real, open & honest about the daily struggles.  We can pull each other up and encourage one another during the rough times, and hopefully each of us will gain health and healing, too.  You all have been there for me and I thank each of you.






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egarber

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Reply with quote  #21 
Hello,

My name is Elayne and I just joined this network.  I thought I was the only one who had the feelings and situations of Hyperaccusis that I am reading from all of you.  I am hoping life will improve, I came down with this in February 2010 and for 2 and a half months I stayed in bed, terrified. I am just starting to go on errands and I am hoping that I will be able to work soon.  Everything that I read from all of you reminds me of what I am going through.  My life seemed to change overnight.  No more movies, no going out with friends to hear music.  No business meetings.  No gym or aerobics.  Somehow, slowly, life will have to come back.  I look forward to communicating with you and not feeling so isolated and frightened.  When I go out I wonder if I look normal still?  I don't feel like myself anymore.

Elayne
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lowerthat3

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Reply with quote  #22 

I've not posted much but I'm still here.  I'm pretty much home bound and I love it because it's quiet.  If I have alot of activities, I know my ear with bother me a little extra.  That's what's happening today so I thought I'd connect here.  I don't find any explanation easy for me to discribe this to my family.  They just know that sound bothers me and I'm always asking them to lower that.   


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aQuieterBreeze

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Reply with quote  #23 
Hi Marilyn,

I'm sorry for the delay in this reply.....
It's good to know you are feeling at least a bit better,
and thank you for your replies. Hope you feel much better .....very soon.

I think sometimes taking it a bit easier after a setback, while we are still recovering from it -  can be helpful...as I think sometimes it can take a while to really get back to where we were sometimes .....
even though it may seem like things are OK. Soundwise,
I have found that sometimes what I am able to tolerate in the way of sound,  may be reached sooner and at lower volumes than if i was fully recovered, and what i am able to tolerate at those times may be less  than i would have expected or thought. 
With sound still being more difficult, than I thought it would be ....... so to just take it a bit easier- and not push it too much or too fast when coming out of   a difficult setback is something i think can be helpful. To gradually work our way back out of it......(instead of pushing things too much) and to continue moving forward.

When recovering from my last major setback I was reminded of that,
that at times, even as I was doing much better (than when the setback started)  I was not able to tolerate sound I thought I would be able to.... and I noticed that I would reach or exceed my tolerances to sound more quickly/at lower levels  than i would have thought.
Thankfully in my case, alot of that was  evident with the music I was listening to, or tried to listen to -
so it gave me some good clues, to continue to take it easier   ---
and with music - I could turn it down and/or change it - but having that be more difficult than I thought it would or should be, made me More aware that I still had further to go to fully recover from my setback, and I was not doing quite as well as I thought I was yet (at that time)  .....

And I was still having more difficulty with some things in the way of sound at those times - like percussion - than I thought I would. For example it would  surprise me when i would put on some music, and the percussion was alot more difficult than I thought it would be. And if i tried to turn the bass up, even just a little - as I turned it down a bit during my setback,  it was more noticeable again too,  and the music was not as easy on my ears, but more difficult ------ so to leave it set a bit lower for a little longer was helpful for me.
Some things that were fairly easy for me to handle otherwise, (before the setback) were still  more difficult for awhile. But even so - it faded away more quickly than i think it would have in the past .....even though it lasted quite awhile.
And even though it was caused by LOUD sound , that anyone would consider loud - it did not take me all the way back to square one,  and that was something i found encouraging.

Thanks for explaining your symptoms -
as I had asked what you experience when you mention  global hypersensitivity -

you mentioned -
you asked about my global hypersensitivity.........

.....It began with sort of a strobe light feeling in my head.  As though I'd been in a room with strobe lights and when I closed my eyes, I could still 'see' the lights.  Kind of a twirling sensation in my head.  A dizziness that's different than any other I've experienced.  It's not a balance dizziness, more of a head/eye dizziness.

There's also light sensitivity........


Though I realize the dizziness you mentioned is different than any you have ever experienced,
what you mention makes me wonder  -- is dizziness something you usually notice from sound?
(Is it something you generally experience with a setback?)


You also mentioned -
It coincided about the time I started wearing the sound generators, so I suspect that I began wearing them too long a time for me?


Since the type of symptoms you mention coincided with when you began using the wearable generators, i can see why you would think they may have something to do with it.......

I don't know much about the wearable sound generators, but  remember you wondering which ones would be best for you to order, as you asked DrJ about that in another thread

You asked DrJ -

"I wonder which white noise generator would be best for me?  The the G.H. Tranquil NM Circuit Style which is programmable, or the Tranquil Simplicity non-programmable?  "

Some of your symptoms sound like they may be similar to those some people may experience with a migraine.
(Though I don't know if you are usually prone to them,  some people are and some are not. And I am not sure how prevalent migraines are with these hearing challenges, though some have mentioned them.)

And I think some medications can cause sensitivity to light, though I don't know much about meds, 
but if you did take anything for your headache or other symptoms --
if you may have taken  anything different than you normally would for a headache
(Or for a migraine, if you are prone to them)  that may also  be something to consider -
though I imagine you have already thought of that.

Some have mentioned dizziness associated with sound and also headaches....
though I don't know how common or uncommon that is.

you mentioned-

The next day, I was so bothered by light, I had to keep the house dark with the mini blinds closed.  Typing on the computer was hard.  Looking at the monitor was bright, and the typing movement was too spinning, even though I'd type with my eyes closed.  The light sensitivity lessened after a few days, though it still hasn't completely left.  Some days are better than others.

What you mention, and hyperacusis by itself  (even without dizziness or headaches) would be challenging in many ways - For anyone.
That you are able to deal with it as good as you have been able to, even though it is harder sometimes than others - is to your credit.
 I hope today is a good day for you, or at least one of the better ones -
and I hope the good days, you have  become more noticeable again - very soon.
Thanks for  taking the time, and effort  to explain what you have been going though.

As far as communicating about it ----- with the symptoms that you mentioned here....
Maybe to let others know Some of your symptoms are similar to having  a  migraine, may give people a clue?
Maybe it will give others around you, or that you come in contact with,  something they can relate to - or understand a bit better. People would certainly understand if someone with a migraine,
or even someone prone to migraines - requested for some music to be turned down, or asked for people to speak more softly ....
And maybe some would get a sense of how isolating that could and would be, at times, as well - and how some understanding and compassion could go a long way.....

Something I thought about - as I was thinking about your situation, and the isolation you mention -
is maybe  once your setback has faded and you are feeling better -
If you can find some  environments YOU are able to tolerate, that you are OK  and  at least somewhat comfortable in --
places where  you may  enjoy spending some time,and that you like  ...
Where the sound levels are  allright for you ... 
What about inviting friends or family members to join you in those environments?
(And maybe not alot of people - especially to begin with, but maybe one or two at a time -
so even the level of conversation  would hopefully not be  too much.   
And maybe even having a backup plan, for if  things get to be too difficult ......
and keeping in mind that at certain times of day and on certain days - some places  may be less crowded and quieter than at other times......just a thought.


Sorry to hear about your not being able to go to the music festival......
Keep in mind there may be a time you may be able to to go ....even if not for the entire festival, for part of it.......
There are some around here that I am sure are able to do things they thought they would never be able to do again .......
Though I still have a long way to go---- I am able to listen to a little acoustic and folk music - played live, over some small speakers - in the coffee shoppe of a book store .....
and at one time to even listen to someone playing an acoustic guitar quietly in my living room, would have been too difficult -
as I was not able to listen to music, for a very long time  .....

And someone around here, is able to go square dancing.......
And many around here are doing much better than they were at one time.

Wishing you much better days, healing on many levels, and more understanding from those around you,
aQB

P.S. Wishing you the best of everything, with your appointment.with Dr. Robb!


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Marilyn

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Reply with quote  #24 
Hi Breeze,
Sorry I've taken so long to reply to your thoughtful post.  You seem to always keep a positive outlook, and that's encouraging.  (Wish I could say the same, but I'm doing much better.  I almost deleted my signature line a few weeks ago, lol.)


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aQuieterBreeze

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Reply with quote  #25 
Hi Marilyn,

Feel free to reply if and when you feel like it. I understand that having the difficulties you mentioned can make being on the computer more difficult.

And I hope you are noticing improvement.

Think of things this way.....you were noticing a lot of improvement before
and if the wearable generators are not right for you - there are still other ways through these challenges.
Take it as easy as you need to for now. Treat yourself well, and don't think of your progress as progress lost.  You've come a long way and learned alot - and gotten a taste of what being able to move forward, and tolerate more in the way of sound  is like.....it can get better. The path is not always smooth, but it can get smoother.
Many around here have had been though some very challenging times with these challenges, and are doing much better.

About the computer monitor - if it still seems too bright -
Though you have probably already thought of this,
it may be possible to adjust  the contrast or brightness,
and maybe dimming it down some would help? And I wonder if it would be possible to do that on your phone for texting? If it seems too bright?

When making changes to  settings on the computer, it can  be helpful to make a written note of the settings as they currently are, so if one wishes to go back to them - it's easier to do that. (And that can probably be helpful with some of the newer options and more complex settings on some newer TV's too )

I hope you are doing better, some of my setbacks have lasted a long time, though the beginning part is generally the most difficult  for me and once they  start to fade - it gets a bit easier.
And things in the way of sound become more tolerable. I've even had my tinnitus get so loud i wondered if it would ever settle back down - but it has. 

Take it easy - and remember,  you don't need to push it ....or overdo it sound wise - just get better. And a step at a time in the right direction can be really helpful.
Remeber what was said about that turtle ? :-)

If you have a lot of things you wish to do - I wonder if it may be easier on your ears, to try it on different days -- with some time in between - than to try to pack it all in at once.
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Marilyn

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Reply with quote  #26 
Breeze,     You're right, people make progress with sound improvement even after a set back.  Thanks for the encouragement.

I lowered the lighting on my cell phone when it was new because I didn't like the flashing so brightly every time I had a text.  I'm not sure how to lower the lighting on the monitor but I'll check into that.

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aQuieterBreeze

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Reply with quote  #27 
Hi Marilyn,

It's good to hear you are doing a bit better.
Since the monitor is difficult / bright for your eyes, maybe you can get your son to help?
Especially if he knows a bit about computers.....
On mine - the monitor settings are accessed directly on the monitor itself, not through the settings on the computer. But the settings when accessed on the monitor show up on the screen.
 Many products have the manuals available online, for downloading - and your monitor may have the make and model number somewhere on the front of it.  If you are unsure where the manual is.
 
 Also changing the "desktop wall paper " may help as well, maybe choosing something that is not too bright and easy on your eyes would be helpful? Some graphics  are brighter than others, and some may be easier on your eyes.
 On mine, i can "right click" on an empty spot on the desktop and then click properties - to be able to change that.
 If you change the wallpaper - remember to make a note of what you are using so you can get back to it if you like.
 
To hear that you are noticing  progress is great!
I know it's possible to notice progress, and "steps forward"  even while still recovering from a setback.  
(In fact that is when i first started listening to music again, though it was awhile after the most difficult part of the setback had passed)
And I think being able to have a very controlled source of sound,  that was tolerable for me at that time was helpful in it's own way, even though i had it on at Very quiet levels.
(I was listening over external speakers, at a distance from them  - and held the remote control for the volume  in my hand, and that was very helpful in a few ways-in part  because my hearing was still very sensitive and to get closer to one of the speakers, which i had to do to get to the CD player or the volume control on the receiver - made it louder, so  to be able to turn it down from a distance, if a song, or part of it  was too difficult - for me was very helpful.)

Rob has mentioned several times,  when talking about these challenges -
(and phrased it slightly differently at times as well)

recovery doesn't always go in a straight line

And to me it is helpful, and comforting in a way - to think of it that way - to know that is just the way it goes with these challenges.
(Though I wish no one had hyperacusis - or any of it's related chalenges, or got setbacks)
I sometimes view it as a back and forth path. where overall and for the most part, the progress is forward.

To think about some around here, who are doing very well--yet knowing  they went through times that were extremely difficult, lets me know a bit of what is possible.
To know it can be done, that things can get better -- to me, is inspiring in itself.

Take care, take it easy, and keep getting better.

P.S. If you need a way to explain these challenges to others, feel free to have them visit this site - or have them take a look at the information, contained in the link above that says "The Hyperacusis Network."
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Marilyn

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Reply with quote  #28 
Thanks for the suggestions, Breeze.  My son has been on a trip to Colorado the past week and a half, but that will be on his 'to do' list after he unpacks.  I don't know if it's the brightness of the monitor that bothers, it's more a combination of  the monitor and the movement of stuff on the screen.

For example, the cursor and letters moving as I type.  (I type a lot with my eyes shut now.)  Or, pages with advertisements, the movement of the ads plus the page loading - the list goes on and on now.  This was NEVER a problem before.  I only recently developed this global hypersensitivity.  I really have to watch my computer time now.  This was a big depressing setback because without texting and emailing I was further isolated from people.  My husband says, "Moderation is key to everything."  YUK, I hate moderation, lol.

I think we all should be commended here on the message board for being such strong spirited and resilient people.  Yea us!


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Marilyn

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Reply with quote  #29 
P.S.  I was just kidding about hating moderation. 




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aQuieterBreeze

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Reply with quote  #30 
Hi Marilyn,


You mentioned-
For example, the cursor and letters moving as I type.  (I type a lot with my eyes shut now.)  Or, pages with advertisements, the movement of the ads plus the page loading - the list goes on and on now.

About some of the items moving on the web pages, someone pointed out that with the animated smilies, if one hits the "esc" button (Upper left on my keyboard)
those little animated things, like the animated "smiles" in the messages we can type to post. hold still.. I tried it on a web page too, where something distracting was moving  - and something did hold still.....
though i am sure it won't work for everything, but some things.

Hopefully changing the brightness of the screen will be helpful.
Let us know and take care.
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