technofamily
Registered: 10/28/09
Posts: 2
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| | 10/28/09 at 05:39 PM | Reply with quote | #1 |
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Hi everyone,
I am writing because after years of trying to figure out what is going on with my daughter's hearing, I think this might be it. I am a little confused as to whether it is hyperacusis or hyperacute hearing.
My daugher has down syndrome, thyroid and ADHD. She has had 4 sets of ear tubes and an A/V Canal defect repair to her heart.
She has always had problems with loud sudden noises. Like sudden clapping, loud church music, people laughing loudly, even talking in a regular voice before bed, etc. I couldn't figure out why she didn't have a problem when she was the one making the loud noises. She puts her hands over her ears, cringes and has a crying fit for some things. She used to be scared of fireworks but now because I always made her go she can handle them as long as she says OHHH and AWWW throughout the whole thing. She is always glad when it's over. I wonder now if it's how she tolerates it by being loud herself.
She goes to regular classes and gets pulled out for reading and math at her level. She receives speech therapy 2x week. She also receives OT once a week. My CONCERN is that she has started "The Listening Program" for 1/2 hour a day 5 days a week. I'm not sure if that is good or not. I guess it depends on what she has.
Please provide me with any input I would appreciate it. Also can my regular ENT audiologist do the LDL test? Should I ask for it? Where do I go from here? I am just so happy to have found this information. We moved to SC a few years ago and my New ENT mentioned Hyperacusis today and I need to know what she has.
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Miriam from SC |
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jayhybrid
Registered: 09/07/09
Posts: 53
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| | 10/28/09 at 08:20 PM | Reply with quote | #2 |
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| Not sure about Down Syndrome, but there is a lot of speculation that children with Autism have Hyperacusis.
If she's having an intolerance to sound, it might be the case. I'd definitely recommend talking to an audiologist who understands hyperacusis. I had a great experience at Univeristy of Maryland Medicine's Hearing and Balance center. They answered all of my questions before I scheduled an appointment.
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jayjay
Registered: 08/26/08
Posts: 121
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| | 10/29/09 at 04:08 AM | Reply with quote | #3 |
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Quote: Originally Posted by technofamily
She used to be scared of fireworks but now because I always made her go she can handle them as long as she says OHHH and AWWW throughout the whole thing. She is always glad when it's over. I wonder now if it's how she tolerates it by being loud herself.
If the fireworks hurt her, you might reconsider taking her to see them? Loud sounds like fireworks can damage her ears. I know I couldn't make it through fireworks. It would kill me! Sure, we need to adapt to everyday sounds, but airplanes taking off, fireworks and loud noises are more dangerous than helpful, in my opinion.
You should see an audiologist or someone who specializes in hearing/communication disorders. I'm not saying you'll find answers, but it's a start. The truth is, and the rest of the forum can attest to this, finding the solution to your problem will be a life-long journey. However, I sincerely hope for the best for your daughter. A 9-year old shouldn't have to suffer like that. My heart goes out to her.
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technofamily
Registered: 10/28/09
Posts: 2
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| | 10/29/09 at 07:02 AM | Reply with quote | #4 |
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Thank you so much. I am starting to realize from reading this and how long it has taken me to find out more about this that is it going to long road. I have always been very pro active when it came to my daughter's health needs and I always wanted an answer for her. I can't be after seeing so many specialists that my new ENT mentioned this in passing. I am going to start with his office and go from there.
I am very thankful for this site and your comments. I guess that because she finally learned to tolerate the fireworks I was doing a good thing. My poor baby. I literally am in tears about this but now I will become an advocate and let people know.
Thank you I am truly grateful.
Miriam
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Miriam from SC |
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Johnloudb
Registered: 07/31/09
Posts: 617
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| | 10/29/09 at 08:32 AM | Reply with quote | #5 |
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Miriam,
Hi, fireworks can't damage her ears. If she enjoys the fireworks and tolerates them say as good as many other day to day sounds it won't hurt her. If it seems to cause her distress then it's probably not helpful though.
If you find that she really does have hyperacusis, you should find a TRT trained doctor to help treat her. Most ENTs (if not TRT trained) don't have a good understanding of hyperacusis and the advice they give is often makes things worse.
If she can handle a quite nature sound radio playing quietly where she sleeps, that could help a lot. It's called sound enrichment and you can read about sound enrichment, as well as TRT (tinnitus retraining therapy) here: http://www.tinnitus.org
__________________
John
~ Patience and Persistence Pays Off ~
My Story:
http://sites.google.com/site/johnsaudiopage/ |
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LynnMcLaren
Registered: 04/28/05
Posts: 7,645
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| | 10/29/09 at 04:43 PM | Reply with quote | #6 |
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Hi Miriam, ((( Smiles )))
I have twin gals with autism.
One had hypo hearing the other one hyper as she would cover her ears as well.
I agree with John that sound enrichment might help.
I think it helped my children as well as I did alot of different types of sound enrichments overtime.
In their Hypo and Hyper hearing that has improved alot from back then.
Plus with that, I've used supplement's overtime as well too but I think sound enrichment was very helpful as well..
Autism now effecting 1 in 92 besides all the other listed learning disabilites neurological disorders in children theses days..
It can be tough as also a decreased sound intolerance can be as well.
But improvement is always possible.
And As JayJay has brought to your attention..
And thats besides possible hearing loss, tinnitus ect..
Under what can cause hyperacusis as on the main home page..
As written besides medications, medical conditions ect..
Quote:
Others may come down with hyperacusis suddenly by attending a rock concert, firing a gun, air bag deployment in their car, fireworks or any extremely loud sound.
And fireworks can be extremely loud..
The further away the better...
It's the visual effects that truly counts the most of all.. (((( Smiles ))))
__________________
Take Care
Lynn |
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gardennut
Registered: 07/15/09
Posts: 37
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| | 10/30/09 at 01:39 PM | Reply with quote | #7 |
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To the mother of the child with Down's , When I tried running a support group for people with Tinnitus and Hyperacusis, I would getmany questions from different people and I remember a mother with a Down's child asking the same thing. So I think this could be a common problem that the children find hard to communicate to their parents.
I would definitely not expose her to loud sounds if at all possible. as this would be unintentional abuse. An adult can speak up for his or her self but it's harder for any child to do this.
Maybe Down's makes an individual extra sensitive in many areas. Good luck with this, as I can appreciate the challenges you must face.
Hugs, Donna
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Donna Keddie |
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Johnloudb
Registered: 07/31/09
Posts: 617
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| | 10/30/09 at 02:38 PM | Reply with quote | #8 |
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Quote: I would definitely not expose her to loud sounds if at all possible. as this would be unintentional abuse.
I don't agree. Over protecting her from exposure to loud normal everyday sounds will just make these sounds more distressing when she does here them. And she'll just become more limited. There are ways to help with sensitivity like sound enrichment.
__________________
John
~ Patience and Persistence Pays Off ~
My Story:
http://sites.google.com/site/johnsaudiopage/ |
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LynnMcLaren
Registered: 04/28/05
Posts: 7,645
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| | 10/30/09 at 03:52 PM | Reply with quote | #9 |
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About Loud Noise Exposure, (((( Smiles ))))
With normal loud and abnormal loud..
I think animals and children can make a normal loud noise.
Though screaming can give one a case of bad Hyperacusis or Tinnitus..
Even a blown kiss..
It's happened to people..
But normal loud can become abnormally loud if a child or animal is sick.
And firecrackers and alot of machinery and other loud noises in society is not what some may call a normal loud sound.
Not normally found in nature but so called man made noise abnormally loud noise or rackett..
Like guns and bombs and explosions..
Most of the normal nature naturally sounds in life are not what one would call loud all the time..
Unless one happens to turn up ones Stereo or TV at an abnormally loud volume and that could not be good for the ears as well overtime..
Some people may talk loud but thats not abnormally loud as that is normal and people should be able to tolerate that well..
It's just I believe that lots of noise in society is not natural but created by someones invention of unnatural loud noise.
I find life around me away from the unnatural to be mostly mellow and quiet or of low volume compared to a leaf blower or lawnmower or vaccum..
Take the broom..
People used brooms before vaccums were invented..
Now that may be more natural noise..
Now a sound machines going on all night while good for a desensitization program isn't natural in nature..
One may sleep by a stream or one may not.
One may sleep in a quiet cave or a constructed sheltor before houses of today..
Yet in ancient time there sheltors were made of thick cement structures buildings and also underground..
with a lack of electricty for sounds to be produced at night..
In the past people have debated the natural from the unatural and most of my life and others have as well who never may come down with H..
Do sleep in quiet and have preferred it that way.
With no problems ever..
But for thoses with abnormal sound tolerance problems we can't do what most normal people do as we have a condition that others don't have.
It's not normal.
I just don't agree that fireworks are a normal noise situation though most can tolerate them but still it can cause tinnitus, hyperacusis or even possible hearing loss..
It can slowly creep up on somebody too..
But with H there is this balance we find ourselves in at times between quiet and normal loud..
It's a balanceing act and not a normal situation we find ourselves in.
And firework exposure even though at a distance caused me immediate ear pain it hurt me alot yet not others there of yet..
At least not hurt in that way, of yet.
As I have read stories of others over the years that being in a sound situation such as that and others their H has worsened or so called come back..
It almost happened to me did happen to me at a certain level after I boldly went out to Chuck E Cheese and then on to another pizza place.
Being as well as I am too..
And I was happy to go too I felt good about it.
Like going to see that display...
It's just the issue of normal noise and abnormal noise and what we may have lost that others haven't of yet.
What has abnormally gone wrong for us..
But I understand the concept and agree with alot of it..
With a desensitization therapy for H..
And even for autism or other sound sensitivity disorders it may help.
It's just the whats called normal to the abnormal I've always had problems with..
It's just me... (((( Smiles ))))
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Take Care
Lynn |
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Johnloudb
Registered: 07/31/09
Posts: 617
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| | 10/30/09 at 05:22 PM | Reply with quote | #10 |
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Lynn, I wasn't specifically referring to fireworks when I said "normal" sounds.
Quote: She used to be scared of fireworks but now because I always made her go she can handle them as long as she says OHHH and AWWW throughout the whole thing.
Yet, she was made to go see the fireworks and sounds like she tolerates them better than she did initially.
Should she quit going to church where people might clap or a kid might scream? Would it be better for her not to go outdoors where a fire engine or police car might drive by with the siren going?
I tried to avoid all sounds that hurt my ears and ended up indoors wearing ear protection. Basically isolated in my room. Is that the solution?
I saw a post here that mentioned that in the book by Dr. Jastreboff and Dr. Hazell, that the ear regulates itself by the loudest sounds you hear. Completely avoiding loud sounds will just make the ear more sensitive.
Lately, dishes clanking together or slamming a door will bother me, set off ringing but I don't completely avoid the sounds, and don't get excited about the ringing. These sounds haven't bothered me in some time. And these symptoms go away, and yes I think good thoughts and don't worry about this stuff.
I guess it depends on what you think the problem is, hurt ears, or increased sensitivity for the sound.
Yes, the sounds we've put in our environment may not be what is considered natural, but that's the environment we have. I believe as Dr. Hazell says that the ear can habituate to any sound. And I have found that true in my own experience.
It seems to me that a lot of people on this board are overly concerned with their symptoms and especially loud sounds.
In this case it's up to the parent to decide what sound exposure their child should be exposed to. And, there are things that can help ... like sound enrichment, or pink noise therapy. And a parent can always observe to how there child reacts and determine what's best for her.
I really doubt her daughter was being "tortured" and there's still more things she can do to help. I think with the help of the TRT doctor she could do things that could greatly her daughter's situation. Just my opinion as always.
Also sound enrichment should be left on all the time. The ear filters out sounds you hear on a regular basis with no particular importance.
__________________
John
~ Patience and Persistence Pays Off ~
My Story:
http://sites.google.com/site/johnsaudiopage/ |
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LynnMcLaren
Registered: 04/28/05
Posts: 7,645
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| | 10/30/09 at 05:45 PM | Reply with quote | #11 |
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Hi John, (((( Smiles ))))
O.K... Thats Good to hear.. ((( Smiles )))
Quote: Lynn, I wasn't specifically referring to fireworks when I said "normal" sounds.
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Lynn |
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aQuieterBreeze
Registered: 02/03/08
Posts: 1,433
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| | 11/01/09 at 03:07 PM | Reply with quote | #12 |
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Hi jayjay,
I agree with you and Lynn and about fireworks being loud -
while I do hope to be able to do many other things again in time,
I seriously doubt I will ever go to another fireworks display-
Fireworks , depending on where they are (and perhaps the display as well) - can sound concussive,
the noise can reverberate off buildings, or water - and the sound can travel a great distance -
and getting out of a large crowd, gathered to see a large fireworks display - and the traffic in the area
can take some time -
And they can be very loud , and sound is not only transmitted through the ears-
so though I was able to go to see fireworks before - and I used to really enjoy watching them,
It's something I doubt I will be doing again
I think I will be happy to watch them on TV ----
and be glad that the sound on theTV is less difficult for me than it used to be -
To me, going to see fireworks, it is a small thing to give up - to protect my hearing/ears.
Even though I used to enjoy them -
I am happy and grateful for the improvement I have noticed,
and I am able to do some things and tolerate some things in the way of sound,
that I thought I would never be able to tolerate or do again,
and though I still have a long way to go- things keep getting better -
and that list of things I will likely not do, or not be able to do in the future -
has gotten shorter than it was at one time-
There are ways through these challenges, and ways to improve our tolerances to sound,
But I think it's a good idea to remember that fireworks are Loud
and sound is conducted not only thorough the ear, but through the bones as well.
And hearing protection only goes so far in some cases,
and in my case, going to see fireworks is not that important to me anymore,
and not something I plan on doing....
I agree they are loud. Too Loud for me to want to be around.
Though I used to be able to go see and enjoy them.....
Hi Lynn,
I know you have tried to watch some fireworks before, I remember you talking about some at a festival.......
I would have loved to have heard it went well......
As I think you also said you used to enjoy them,
and sitting close to see the displays -
me too....It's something I used to enjoy
but it's one of the things, I don't plan on doing again....
So much is possible if we work on improving our tolerances though, (in ways that are appropriate for us to do so)
So many other things to do...and enjoy, and be happy for.
I really do hope to be able to go to a concert again someday -
outdoors where the sound can "escape" into the night air, and where i can leave if it's too loud, or too much For Me -
and where I can be as far away from the speakers and sound system as necessary -
but I am not ready for that yet - don't know if I ever will be,
but I hope so -
and for now, I'll just keep working on getting better,
and be very happy and grateful for the improvements I see (actually hear)
Hope things are going very well for you, and Thank You, for being here and sharing your experiences
and what you have gone through
and I am glad that you have gotten better-
I'm happy for you!
These challenges can be very difficult, and It's so good and inspiring,
to know it is possible - to get better.
Many thanks to you, And others who have kept this path lit with inspiriation.
Hi Miriam,
I hope you find the answers you are looking for,
I do not know that much about Down syndrome,
and I am not in the medical field -
But there is something called misophonia, and also phonophobia,
that can occur along with, and from what I understand also independent of - hyperacusis
And those conditions (dislike of and fear of sound) may be something to ask your knowledgeable clinicians about -
they are also talked about on Dr. Hazel's website -
(which John mentioned -when talking about sound enrichment )
That site contains a lot of information - including some information and articles that can be downloaded, and I think it is kind of them to do that -
Here's another link, (see the links in the left hand column of that page for more info)
http://www.tinnitus.org/home/frame/THC1.htm
The Tinnitus and Hyperacusis Centre: home of TRT
And in the pages for the network - if you click the link in the upper left of this page that says
The Hyperacusis Network-
there is a lot of information there, including some on misophonia and phonophobia,
Though I have no way of knowing what your daughter has -
except a mom, who must really care a whole lot.
Good luck in finding the answers and solutions you seek.
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Johnloudb
Registered: 07/31/09
Posts: 617
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| | 11/01/09 at 11:12 PM | Reply with quote | #13 |
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I don't know what the big deal is about fireworks. When you go to a display assuming you're a decent distance away from them, they really aren't that loud, not that I remember. Maybe you guys got a lot closer that I did?
Lighting fireworks in your yard like fountains that scream at you, and fire crackers are loud. Yet, I tried lighting some fireworks this 4th of July and hand no idea how loud they'd be. They let out high pitched scream and I listened for a couple seconds and then covered my ears. After that I lit some sparklers. But, about 10 minutes later I went back and lit another loud one. And, listened as long as I could, maybe 30 seconds. But at least I tried, and it felt good to do that.
I recently started using a loud blender again. I'd used to leave the kitchen when anyone blended. Then I gradually listened more as I could. Recently my mom had to have knee replacement surgery so I've had to do my own blending and I now stand right next to it and blend. Sometimes when I'm not up to it I turn it on and leave the room while it blends.
But, I keep trying. How do you know what you can an can't handle if you won't even try? If you're afraid to try because you think it will hurt your ears or make symptoms worse then you're phobic. That's the definition.
Breeze,
I know your trying to do more like others here, and I think it's wonderful that your making progress. Which is not easy. I've certainly been at this long enough.
But, I don't agree with you and Lynn, that people with hyperacusis won't be able tolerate loud sounds, and should completely avoid loud sounds.
Loud sounds should probably be approached slowly at first, but that's the desensitization process.
__________________
John
~ Patience and Persistence Pays Off ~
My Story:
http://sites.google.com/site/johnsaudiopage/ |
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LynnMcLaren
Registered: 04/28/05
Posts: 7,645
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| | 11/02/09 at 05:20 PM | Reply with quote | #14 |
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Hi A Quieter Breeze, (((( Smiles ))))
It's a possibility that you will eventually ..
The best way to know if thats a possibiltity for you is to build up to it over time..
As you notice you can tolerate more today then you could tolerate yesterday.
What will be for you will be for you by building up your tolerances overtime.
I've read many stories here over the years on people doing just that.
On improvements.
You will be able to enjoy alot again..
And enjoy it even more so because you can.
Knowing how it feels not to be able too.
Makes it all the more enjoyable.
I know the feeling that that brings you will too someday.. ((( Smiles )))
Quote:
I really do hope to be able to go to a concert again someday -
outdoors where the sound can "escape" into the night air, and where i can leave if it's too loud, or too much For Me -
and where I can be as far away from the speakers and sound system as necessary -
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Take Care
Lynn |
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LynnMcLaren
Registered: 04/28/05
Posts: 7,645
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| | 11/02/09 at 06:22 PM | Reply with quote | #15 |
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Hi John, (((( Smiles ))))
I think you may be misunderstanding what I am saying somewhat..
Thats not exactly what I am saying..
Thats a general statement..
Alot of people with hyperacusis will be able to tolerate loud sounds again some louder then others.
It depends on how better ones hyperacusis gets and is at the time.
Even after a full span of TRT one may not get 100 percent well..
I've read it all on this board over the years of people who have reported how better they have got or have not got...
What limitations they have been left with or even after maybe a year or years of being like normal again they overdid it and got sick again..
Extreme exuberance..
They were doing fine at thoses nightclubs, events ect then one day there back at square one again.
And that it's been harder for some to get well this time again, not like before..
And there have been people who had got sick again and not exactly sure why..
And there are some people who don't know why they got H in the first place and some people that say they were like everybody else without H till that one loud event..
So..
Thats like saying fireworks gave someone a bad case of H but now that their better after a long spell of being sick..
They can go back to that firework display and they wouldn't ever get sick again.
It's good for them..
Fixed for life Hmmmm..
Or lets say a person working in construction ect came down with a bad case of H and it took them along time with sound therapies to get better..
So it's a good idea for them to go back to the situation that gave them H in the first place as it will be different this time????
It's always a risk..
Expecially after showing one is vunerable to a hyperacusis disorder in the first place..
I think as well too that one should shoot for the stars and try to improve ones condition and build up gradually overtime..
Most likely one will improve alot..
Go shopping again to malls walking by traffic laughing with friends and family outdoor and indoor events ect...
Have a decent life..
But at the same time there has to be a realty check..
Hyperacusis is a real condition & can be life devestating & everyone is different not exactly the same or their outcomes are not exactly the same.
And there are different ways different things that can bring on a case of hyperacusis as well..
besides thoses who are not sure how come they got H in the first place..
It's more complicated then just that though I do believe as you do that one should try to shoot for the stars improve as much as one can..
But with out extreme exuberance ..
As people came down with hyperacusis in the first place maybe by doing just that..
Being exposed to certain situations..
Before comeing down with H...
Hyperacusis is a reality it does happen from time to time..
Quote:
But, I don't agree with you and Lynn, that people with hyperacusis won't be able tolerate loud sounds, and should completely avoid loud sounds.
Plus lighting them is alot closer then I got to them..
It was still loud not lighting them and being at a distance.
And it did not feel good in my ears to be there when they went off..
Not that time or any other time for me..
Everybodies different but I'm happy for you just stay well.. ((( Smiles )))
Quote:
I don't know what the big deal is about fireworks. When you go to a display assuming you're a decent distance away from them, they really aren't that loud, not that I remember. Maybe you guys got a lot closer that I did?
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Lynn |
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Johnloudb
Registered: 07/31/09
Posts: 617
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| | 11/03/09 at 08:56 PM | Reply with quote | #16 |
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Quote: I think you may be misunderstanding what I am saying somewhat..
Yeah, I think I was.
Quote: And there have been people who had got sick again and not exactly sure why..
And there are some people who don't know why they got H in the first place and some people that say they were like everybody else without H till that one loud event..
I think people who don't have a good understanding of the Jastreboff Model and have trouble dealing with there phobic mindset have a difficult time maintaining progress. Dr. Hazell mentioned this too.
You don't need to know how you got hyperacusis to treat it. If hyper is caused by some other seperate problem, then there may be limits to recovery. I don't know.
People should not subject themselves to sounds loud enough to cause ear damage. And should wear ear protection.
Quote: Plus lighting them is alot closer then I got to them..
It was still loud not lighting them and being at a distance.
And it did not feel good in my ears to be there when they went off..
Not that time or any other time for me..
Everybodies different but I'm happy for you just stay well..
I was thinking of big fireworks displays like at a park. And I don't recall them being that loud, certainly not ear damage loud. But I was never that close to them. Home bought fireworks can be loud, and it's probably smart to wear ear protection if it's too loud. The fireworks I lit were not too loud though, certainly not ear damage loud.
My dad had hyper, didn't want anything to do with TRT or ear devices. Just his personality ... he does his own thing. He just said he'd let his ears rest and take it easy with sounds when his ears would get hurt. He made a full recovery. Now he plays the stereo so loud sometimes and I have to tell him to turn it down or he'll damage his ears. He played the french horn in the air force band and likes to play his classical music pretty loud sometimes.
I'm just saying that I think if people want to succeed with a full recovery they should toward a sound exposure level that's normal for them. And a full recovery is possible. Acting normal as possible and not getting to concerned about symptoms helps in that regard, I think. I know it's helped me a lot.
Take Care,
John
__________________
John
~ Patience and Persistence Pays Off ~
My Story:
http://sites.google.com/site/johnsaudiopage/ |
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LynnMcLaren
Registered: 04/28/05
Posts: 7,645
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| | 11/03/09 at 11:45 PM | Reply with quote | #17 |
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Hi John, ((( Smiles )))
Maintaining progress..
I've had my worsening, setbacks and two collapses in the past..
One worse then the other but I have progressed maintained my improvements over the years.
Mostly..
I have ventured out overtime to more outtings and events over the years..
but there is a limitation of some sorts something that didn't heal up 100 percent in tolerances but at a high level of sound.
And also at a certain kind of sound vibrational loud and sharp.
But otherwise I'm pretty like normal except the crackling in my ears and the rumbling booming thing at times..
That also can rumble on sound exposure but still it's not all the time..
But as I'm mostly improved..
But still not 100 percent strong ears like pre H..
I can still expirence pain in my ears ect but thats rare too as it has to be at a
higher level of sound ect but at a level that doesn't cause pain in normal ears..
I know this for sure and I wish it was just phonophobia..
But I have no fear anymore just regrets..
Phonophobia was in my worse stage of hyperacusis and so long ago..
Actually this is pretty good compared to that..
But after years of sound therapy from pink noise music therapy sound machines..
I'm in regular sound and this may be as good as it gets..
And thats O.K. as long as I don't get sick with H again..
As it has happened to people in the past who were enjoying there new found freedom maybe to much..
to the extreme but not so for others that were at the same event ect..
I have enjoyed my new found freedom and have for along time now..
Though not 100 percent improved but maybe this could be as good as it gets after
so long of a time but still..
It's pretty good and worth it to try to get well as most can improve with H..
No matter if they did not get there pre H real strong ears back. ((( Smiles )))
Quote:
I think people who don't have a good understanding of the Jastreboff Model and have trouble dealing with there phobic mindset have a difficult time maintaining progress.
Dr. Hazell mentioned this too.
Or mostly moving forward plus it also depends on one's severety of H.
It can be hard being in that kind of circumstance.
For sure.
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Lynn |
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Johnloudb
Registered: 07/31/09
Posts: 617
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| | 11/04/09 at 07:01 PM | Reply with quote | #18 |
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Yeah, forward progress is the main thing. I've had some big setbacks as well but not for some time.
Have you ever seen a TRT doctor and got ear devices. I can say they make your ears stronger and feel more normal. I have the General Hearing Instruments (GHI) ones. That's the primary treatment for Hyperacusis and might help you with loud sounds. In any case, sounds like you've made very good progress.
Quote: But otherwise I'm pretty like normal except the crackling in my ears and the rumbling booming thing at times..
That also can rumble on sound exposure but still it's not all the time..
I've never had that, I don't think, and I've had most everything related to hyperacusis. Maybe that's something different ... I don't have a clue. You might ask Dr. Hazell about that.
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John
~ Patience and Persistence Pays Off ~
My Story:
http://sites.google.com/site/johnsaudiopage/ |
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LynnMcLaren
Registered: 04/28/05
Posts: 7,645
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| | 11/04/09 at 07:22 PM | Reply with quote | #19 |
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Hi John, ((( Smiles )))
Yes I have.. Thats where I had LDL's taken so long ago.
But no, I did not get the ear devices my condition took a bad turn a collapse and I could not travel back to see him again..
If I could I would have as I went in the first place and not feeling well..
Quote:
Have you ever seen a TRT doctor and got ear devices
My ears do feel stronger and I did get very good advice for my hyperacusis from Dr Vernon at one time..
And did multi sound therapies and I am like cured in normal everyday sound.
Just somethings didn't totally clear up and I don't think that after all that I have done and been through & being in normal sound now and for along time now, tolerating that pretty well..
That I would get anymore better then this after all this time..
Not everybody that does TRT gets 100 percent better just because they did TRT...
There are rates of improvements as I've read them listed on this board in the past..
The numbers..
Yet.. TRT is a very good therapy but so is pink noise too..
As well as other desensitization plans..
I don't think investing all the expense is going to make a difference for me.
Plus...
I don't think TRT can fix that...
Quote:
the crackling in my ears and the rumbling booming thing
Thats why people have undergone surgery..
There are risks with that and it doesn't always work for everybody.
Because there may be other factors involved as well..
http://www.chat-hyperacusis.net/post?id=1076268&highlight=surgery+tendons+spasm
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Take Care
Lynn |
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LynnMcLaren
Registered: 04/28/05
Posts: 7,645
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| | 11/05/09 at 12:06 AM | Reply with quote | #20 |
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Plus, ((( Smiles )))
I just wanted to add for anybody that has come down with the crackling rumbling ect thing.
At first like when one gets tinnitus..
It's a new thing it can be hard..
But like tinnitus...
It can be tuned out eventually and it may improve or get better for some people..
For me...
Sometimes I forget it's there you just get use to it after awhile..
It's disturbing at first but it can get better after awhile..
It's not that bad...
Forget the n as I'll edit it out later on my laptop as my delete button went out on this computer again..
It happens now there's an a..
It's touchy it works then it goes out..
a
n
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Take Care
Lynn |
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