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Artnono

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My name is Arnaud, I have 36 years old and I'm French. It is 6 years since I have hyperacusis in a form strong enough.
I have especially low frequency and it is difficult to protect myself. I live alone and do not see anyone except my father who gives me what to eat. I've tried everything and nothing has worked only alpha lipoic acid to relieve much my hyperacusis. This is the first time I post on a forum in english. Excuse me for my poor English level.

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LizH

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Reply with quote  #2 
Welcome Arnaud and don't worry at all about your English - it is quite good enough to communicate well.  Here on this network you will find lots of good friends willing to share information, and encourage you in ways to achieve a more normal life again.
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Artnono

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Reply with quote  #3 
It's very nice Lizh, thank you very much for the welcome.  I also hope to help others.

Arnaud.


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LynnMcLaren

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Reply with quote  #4 
Hi Arnaud, ((( Smiles )))

Thats Interesting...
Alpha lipoic acid helped you..
Alpha lipoic acid can cross the blood brain barrier and is a usefull tool in the treatment and prevention of diabetic neuropathy and also capable of lowering blood glucose..
And also the powerfull antioxidant also increases glutathione levels in the cells and chelates mercury and cadium.
I'm really into reading up about neurodegenerative disease's autoimmune and inflammation..
Protecting the brain from injury and trying to heal injury..
I wanted to give my daughter ALA but have to wait while she's chelating as she's got alot of mercury in the extreme levels still comeing out of her body and ALA does go into the brain so it would be a double whammy but thats what I'm going to do once her levels of heavy metals come way down according to the lab tests..
Maybe somebody can translate this for you..
I could have wrote more but hope this doesn't overwhelm you as French is your first language.. 
Sorry if I did and you already know this... ((( Smiles )))     

Quote:
alpha lipoic acid to relieve much my hyperacusis


And IP6 and Insitol is really good for the brain as well..
Brain Body Gut Neurological thats what I'm into these days..
Anything that is good for the brain/body could help..
Whatever seems to help is helpfull indeed...
Why not?? 

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Artnono

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Reply with quote  #5 
Hello Lynn ((smile)) ;-)
Don't worry i understand you, I dont really know why AAL help me. For others it doesn't... You talk about vitamins;  I noticed that it help me too after a crisis of hyperacusis. I spent a lot of time taking corticoids. Now i've got something to stop a crisis. Sure i'm very sensible but i'm not afraid of noïces...
Have you tried  TRT ?
  

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Guflu

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Bonsoir Arnoud,

sorry to hear about your struggle with hyperacusis. I don't really know what it is to have it with low frequencies, for I have never had troubles with low frequencies, only with high pitched frequencies. So I am very curious to read what you experience.

It is said that TRT helps for almost any hyperacusis, and that it is not good to keep away or OVERprotect yourself from the sounds that you are sensitive to. This will only make you more sensitive,

Are you also afraid of low frequency sounds?

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Artnono

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Reply with quote  #7 
Hi gufly, thanks to be interested by my story ;-)  
i'm sensible with every frequences but low frequences make me hill and tired.
I 'm not afraid of noïce, i could go in the street, i could even go to a concert you know with some kinds of drugs, but my problem is after the noïce...
I was afraid (before AAL) of the crisis after.
I tried TRT but it was worse after. And i think i'm not alone like that...
I put a white (or pink in english) noïce in my room to sleep, not to feel low frequences in my body. A kind of TRT if you want. I try not to abuse of this noïce because i'm more sensible after, it just help me to sleep a little.


   
     


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Debbie

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Reply with quote  #8 
Hi Arnaud, I am sensitive to low frequencies...and high frequencies .
The low frequencies that I am or have been sensitive to include the refrigerator, louder air systems, computer, vaccum cleaner, car, etc.
I have improved a lot, I believe craniosacral therapy helped me, as well as some other things.
I think Lynn's references to IP6 & inostitol are interesting, but I have not tried them.
What happens or did happen to you when you were around low frequencies...
and what types of things make the noises you are or were sensitive to?
Is there a site for hearing sensitivitis in France? I might know more but I can't read the French in your blog.
Wish I could read French.
I notice this board has active members from the Netherlands, Canada, Australia, England & the USA here...but not many from elsewhere.
So I wonder if there are other resources there.

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Dan

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Reply with quote  #9 
Hi Arnaud!

I also have problems with low frequency sounds and vibration. It started a few weeks after I had heart surgery, and I've had the problem for almost two months. Car engine noises and road noises are the worst. They give me headaches.

What kind of low frequency sounds are a problem for you?
What are your symptoms?

- Dan
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LizH

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Reply with quote  #10 
Hi Arnaud,
There was a post by Dr J in a thread about vibration a few days ago and she mentioned something called vidroacoustic disease and also something else to do with low frequencies which you could look up.  It might be relevant to your case.  I also find low frquencies a bother for example when I go into a shop where they have refrigerated food display units, I feel as if all I can hear is the noise of the refrigerator.  You're not alone.  Tell us more about what how you feel in the crisis afterwards.

That is very interesting what you wrote about alpha lipoic acid. It's always good to know what helped someone else.

And can you please write more about why TRT didn't work for you?  What happened?

take care, Liz.
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aQuieterBreeze

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Reply with quote  #11 
Hi Artnono,

You mentioned-
I put a white (or pink in english) noïce in my room to sleep, not to feel low frequences in my body. A kind of TRT if you want. I try not to abuse of this noïce because i'm more sensible after, it just help me to sleep a little.

There are some "sound machines" that people use as well,
for "sound enrichment" while sleeping, so it is not totally quiet.
There is a thread around here about those too.

To have some sort of sound one can easily tolerate
playing in the background, so it is not really quiet.....
I found for me, using a cd filled with nature sounds to be really helpful.
I left it on in the daytime for a long time,
I would listen to it while I slept if I could- but my stereo, and cd player
are in the other end of the house.

You mentioned something about going to concerts?

i could even go to a concert

Do you use earplugs when you go to concerts?
The sound levels may be well above what would even be
acceptable recommended levels for people with "normal" hearing".
And I have a feeling that many places use sub woofers these days.
I think subs could be difficult to be around, especially if someone is sensitive to low frequency sound.

You also mentioned something about TRT-

I tried TRT but it was worse after. And i think i'm not alone like that...


Though I do not know who you went through for TRT, or how long you tried it for-
Some have been under the impression that just because they got the wearable sound generators, they were going through TRT. But I have also read that TRT involves more than that.
And from what I have read, though some seem to have a difficult time with it,
Others have had some Very good results.

And from what I have read, it can make a big difference sometimes who someone goes through for TRT.
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Artnono

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Reply with quote  #12 
First of all, thank you for the friendly welcome, i will try to reply to your answers.

Quote:
Originally Posted by Debbie

The low frequencies that I am or have been sensitive to include the refrigerator, louder air systems, computer, vaccum cleaner, car, etc.
England & the USA here...but not many from elsewhere.
So I wonder if there are other resources there.


Hi Debbie, i'm sensitive to all of this things but espicially the cars motors.

Quote:
Originally Posted by Debbie


What happens or did happen to you when you were around low frequencies...
and what types of things make the noises you are or were sensitive to?
Is there a site for hearing sensitivitis in France?



I's very difficult to explain Debbie, i' will tell you that the most difficult to live is the tireness i think, i feel like see seak, kind of nausea. 

Quote:
Originally Posted by Debbie


Wish I could read French.

I notice this board has active members from the Netherlands, Canada, Australia, England & the USA here...but not many from elsewhere.
So I wonder if there are other resources there.


You can traduce it with the google toolbar i think even if it is no perfect ;-)
(It's not really a blog, i try to find information talking about our disease)
There's no websites forums   for hyperacusis in France, only for tinnitus. I've got tinnitus too like most of you, but strangely it is easier to talk about this in another language. 


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Artnono

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Reply with quote  #13 
Quote:
Originally Posted by Dan
Hi Arnaud!

I also have problems with low frequency sounds and vibration. It started a few weeks after I had heart surgery, and I've had the problem for almost two months. Car engine noises and road noises are the worst. They give me headaches.

What kind of low frequency sounds are a problem for you?
What are your symptoms?
- Dan


Hi Dan !  exactly like you i've got headaches,  i feel tired , nausea and i had vertigos on time when i was in crisis two years ago.
 

 



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Artnono

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Quote:
Originally Posted by LizH

  You're not alone.  Tell us more about what how you feel in the crisis afterwards.


Thank you very much LizH, i will look for the thread of doctir J. Crisis come after a big noïces or after being exposed during a long time
 
Quote:
Originally Posted by LizH

That is very interesting what you wrote about alpha lipoic acid. It's always good to know what helped someone else.


Yes i Know 5 persons whot told me that it' is better when they take AAL.

Quote:
Originally Posted by LizH

And can you please write more about why TRT didn't work for you?  What happened?

At first, it was very fine, i was eable to do lot of things. It's was difficult but
it helped me. But on day my tinnitus was very strong. The strongest tinnitus i had.
For on week, i left "TRT" and my tinnitus fortunately came back "normals".   After 6 month i was very much sensitive of TRT i was very much sensitive...


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Artnono

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Quote:
Originally Posted by aQuieterBreeze

There are some "sound machines" that people use as well,
for "sound enrichment" while sleeping, so it is not totally quiet.

Hi QuieterBreeze ! Thank you, it's difficult because i must put a sound   
precisely which may mask low frequences.

Quote:
Originally Posted by aQuieterBreeze


You mentioned something about going to concerts?



No, i just told to say that it is not
psychological , I could do that but i will suffer after... I'm not sur i could do, one trauma is enough.   

Quote:
Originally Posted by aQuieterBreeze

And from what I have read, it can make a big difference sometimes who someone goes through for TRT.

It's true everyone reacts differently with
the TRT.

In France we talk about "l'Antiglutamate" of the professor Puel. It will be a medecine
for Tinnitus. Puel do not know if it will work for hyperac. I hope so for us.

Thank you my friends.

Arnaud.


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Debbie

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Reply with quote  #16 
Arnaud, thank you for responding to all of us!
A question: Have you read the work of Dr. Alfred Tomatis, he was a French doctor.
Now there are sound therapies based on his work.
I is not pink or white noise and is said to be helpful for some of what you describe and also for problems with low frequencies.

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Artnono

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Reply with quote  #17 
Hi debbi,

I know is work but he has no good reputation in France. To make a white noïce i just use an old radio "shhhhhh" or i use a sort of ventilator too wich mask quit good low frequences. I just want to precise that i can't support sound of voices... my father has to write on paper. I am recognized as handicapped but i would be glad to find a work by internet because that would also help to have a social life even being at home, just to feel normal...     

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LizH

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Reply with quote  #18 
Dear Arnaud,
I'm so sorry to hear how bad is your situation.  It seems to me that you really need the advice of an expert in H.  There is a list of names and contact details of European clinicians trained in treating H on this network and I remember there are several in Belgium.  I can see that travelling would be a huge problem for you, but in another thread there is information about noise cancelling headphones (Bose and other kinds) which might enable you to travel without too much pain. Some people on this network say they are good for travelling.  The thread was begun several months ago and I think it was called "Noise cancelling headphones".
Liz.
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Artnono

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Reply with quote  #19 
Thank you Lizh for your advices, i've been many months in Paris to see one of the specialist of tinnitus.  It was very hard to go in Paris for me. After that it was worse.I will try maybe a "Bose" but i don't don't really no if it is a white noïce or not.



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Debbie

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Reply with quote  #20 
Hi Arnaud,
Very few hyperacusics have tried craniosacral therapy, but I believe it really supported my healing.
I have improved about 65-90% over the last few months due to various things, but craniosacral therapy I believe really helped.
I had someone come to my house.
I think therapeutic touch, especially craniosacral therapy, can help one overcome pain and suffering and move on, more completely and truly than with a pill.
It is gentle and painless.
Upledger.com has lists of Upledger style practitioners.
And another style of craniosacral therapy, "biodynamic craniosacral therapy" is even more gentle yet possibly even more relaxing and helpful to ones nerves.
It sounds like you are in a entrenched pattern of disability, and maybe therapeutic touch, especially craniosacral, could help move you past this stage.
I know it sounds crazy, because these are your ears, but craniosacral is hepful for other ear conditions too such as childhood ear infections.
If you tried it, I think you'd know after about 3 sessions if it was starting to help.
I would recommend a series, at least 8...and possibly more later.
I have had 8 sessions and will do more when I can again.

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LizH

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Reply with quote  #21 
Hello Arnaud,

I read how you went to Paris for treatment for T but did the doctor there treat you for H too?  I believe that the best thing is to treat the H first, and then when it is much improved, then treat the T.  It is clear that you have very severe H so maybe that is why the TRT didn't work well for you (just my opinion, I am not a doctor).  Have you tried any sound therapy for H?

With the noise cancelling headphones, they protect you from external noise, but they don't make a noise themselves.  I think maybe they would protect you from noise while travelling.

I am very pleased to read Nemi's post above about the doctor in Strasbourg and the address and contact details are in her thread. I hope it is helpful to you.

Best wishes, Liz.




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Nemi

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Reply with quote  #22 
I bought BOSE noise cancelling headphones for 299 euros!! and honestly, I found that my Peltor Optime III (like those that construction workers wear) shut out the sound better while travelling...
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dpellerin

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Reply with quote  #23 
Quote:
I bought BOSE noise cancelling headphones for 299 euros!! and honestly, I found that my Peltor Optime III shut out the sound better while travelling.


That's true because Bose and other active noise canceling headphones are designed primarily to actively cancel low frequencies (100hz-1000hz) and they are very good at this. They also passively block mid frequencies but only marginally so. This is usually by design. They make these for people to be able to hear cabin conversation while blocking out the plane's engine noise.

The good passive muffs such as the Peltor III or Belson Thunder T3 are better than Active Bose at mid and high frequencies but are not as good for frequencies lower than 1,000Hz.


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LizH

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Reply with quote  #24 
Dp, thanks for filling in those details, but since Arnaud seems to have more severe problems with low frequencies, the Bose still might be best for him.

Arnaud, I do wish I could write well in your language so you could understand better.  Is any of this making sense to you?  If not, just ask and we'll keep trying.

Thinking of you, Liz.
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dpellerin

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Quote:
the Bose still might be best for him.


It might... Then again it might not. Arnaud also mentioned that he has problems with voices which he can't handle and needs to have his dad write down his thoughts instead of speaking them out. Voices are in the mid frequency ranges. In view of this, he might be better to compare these types of headphones and perhaps let him decide which one he is more comfortable with. 

I also had that problem before with voices and at that time the passive T3's were better for me than even the high end $900 aviation active digital noise reduction headphones which I did a test run with. These reduced low frequencies even more than the Bose but had mediocre mid frequency noise reduction. In a plane cockpit, these would have been ideal. But in a car (with lots of mid frequencies from road noise), the T3 were better for all around noise reduction.



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LizH

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Reply with quote  #26 

Of course Arnaud himself would be the best judge of what suits him best.

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Artnono

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Quote:
Originally Posted by Debbie
Hi Arnaud,
Very few hyperacusics have tried craniosacral therapy, but I believe it really supported my healing.
I have improved about 65-90% over the last few months due to various things, but craniosacral therapy I believe really helped.


Hi everybody !
excuse  me to be late,  i will try to reply. personnaly in on post this time ^^
Please, Debbie,  what is  "craniosacral therapy"  ?
I don't know what is it but if i could on day i would try. I'm glad you feel better.   

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Artnono

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Quote:
Originally Posted by Nemi
Bonjour Arnaud
I am in France too, in Rouen. I have read this thread and I am interested in trying craniosacral therapy.... not sure how much luck I will have in finding a practitioner in Rouen...
Have you heard of Dr. Dominque Vogue in Strasburg for TRT? I think that the trip would be too long for me. I am 7 months pregnant as well.


Bonjour Nemi ;-)
unfortunetly today i can't travel, and Strasbourg, as you know is not  next door ;-)
I hope you could find an praticien not too far from Rouen.

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Artnono

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Quote:
Originally Posted by dpellerin

I also had that problem before with voices and at that time the passive T3's were better for me than even the high end $900 aviation active digital noise reduction headphones which I did a test run with. These reduced low frequencies even more than the Bose but had mediocre mid frequency noise reduction. In a plane cockpit, these would have been ideal. But in a car (with lots of mid frequencies from road noise), the T3 were better for all around noise reduction.



Thanks dpellerin for informations, i'm very interested by this. Only it's not very cheap for me . ^^

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Artnono

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If you want to talk i have put my MSN adress ;-)



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Debbie

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Reply with quote  #31 
Hi Arnaud, just saw your question.
Craniosacral therapy is a gentle touch around your ears, head, face, joints, and lower spine.
A scientist might disagree that this is possible...
but:
The therapist feels pulsations of energy and the flexibility of joints, especially the joints which pulse as fluid circulates around membranes in the skull and to the bottom of the spine.
Also, by being mostly still and very attentive, a gifted therapist feels how vitality is flowing in general.
There are two main forms of craniosacral therapy.
One (Upledger version) is more active and manipulative of the head,
the other (biodynamic) is more "simply" supporting those places with touch.
The results for the receiver are deep relaxation, sometimes resurfacing memories and the chance to say goodbye to old stories...so new times can come in...many times pain relief.
Childhood ear infections, head injuries, whiplash, tinnitus and many other physical issues seem to be helped by craniosacral therapy.
There was a humanitarian effort where siamese twin babies who were joined at the head were flown to the US for free separation surgery.
The babies got craniosacral treatment daily from a team at Upledger Institute before and after the surgery.
They seemed to make much neurological progress beyond where they had been when they began with craniosacral therapy.
And the daily CS therapy after the separation to help their brains adjust seemed to help recovery.
I think craniosacral therapy should be clinically studied much more...
Just now some studies are just done (in Medline database) and more underway.

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LynnMcLaren

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Reply with quote  #32 
Hi Artnono, ((( Smiles )))

I used vitamins as well..
I took magnesium B vitamins E ect...
While undergoing sound therapies..
To help myself get well..
I didn't try ALA back then though I've read so many good things about it.
The way I thought about things back then was so much different then the way I think about them now.
Plus.. I had wide spread problems with sounds from low to high.
All sounds where hard on my ears.
At my worst it was all of them.
I didn't do TRT but sound therapies at home..
I became homebound and started with pink noise and eventually included other sound therapies in a desensitization therapy plan overtime..
Gradually building myself up..
Sorry I haven't been around lately came down with a bad virus..
It's going around but oil of wild oregano seems to help fight it.
I haven't taken any over the counter cough ect meds..
Wild oregano seems to help..
With this virus.. 

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Artnono

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Reply with quote  #33 
Hi everybody,

Thank you Debbie for the long and complet description of the craniosacral therapy.
I'm glad that you feel better with origan oil. I hope it will keep going. I will try it.
 
For the first time since four years,  i went to the sea next week. Two hours from here in car. I was less sensitive. I was just very tired after that. But i can't use words to describe what i feel. Maybe a prisoner feel that when he's free...     

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aQuieterBreeze

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Reply with quote  #34 
Hi Arnaud,

I have heard that some find the sound of the ocean soothing.
(My guess is for some it could be not only tollerable for the ears, but pleasing in other ways as well)

You said-
i went to the sea ......

If you found the sound of the water and/or waves  be to your liking, perhaps a cd of some sounds that are similar would be something that may be useful for "sound enrichment"?
I am pretty sure there are also "sound machines" that have an ocean type sound setting on them......

Though there are other sounds I found soothing, to find what I did find soothing and tolerable helped me in many ways.

 you said-
Two hours from here in car. I was less sensitive.

That in itself must be a good feeling. :-)
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Debbie

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Reply with quote  #35 
Hi Arnaud! Congratulations on getting out!!!
This is wonderful news!!!
You are a prisoner being set free.

Interesting that you mentioned the ocean.
It's hard to explain, but especially with biodynamic style there is a relationship between craniosacral therapy and the ocean.
What the therapist "listens" to (with still hands) is the in/out pull/push of "tides" in the body.
The therapist feels the still body holding the moving fluid.


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LynnMcLaren

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Reply with quote  #36 
Yes.. Good News! ((( Smiles )))

Plus ALA helps insulin do it's job..
It's a powerfull antioxidant for the nerves and brain..
It helps protect nerves...
And has to do with the fatty oils and liquid water..
Glad it helps you...
There's more to it that Dr Richard L. Becker was talking about it today..
His foundation for healing also is a real good book to have..
That and Dr Russel Blaylock he's a neurosurgent I have his book too..
Interesting reading...
I'm really into brain nerve ect health issues theses days..
It's good to try to stay well..
Hope it gets better and better for you...
Glad your doing somewhat better Arnaud..

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John7

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Reply with quote  #37 
Bonjour Artnono et bienvenue: Je sympathise avec tes tourments, croyez-moi . J`habite une grande ville plein de bruit et c'est constammnent une lutte pour me protéger. Quoique il semble que mon cas est moins sèvère que le tien. Bonne chance. Jean
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Artnono

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Reply with quote  #38 
Quote:
Originally Posted by aQuieterBreeze

If you found the sound of the water and/or waves  be to your liking, perhaps a cd of some sounds that are similar would be something that may be useful for "sound enrichment"?
I am pretty sure there are also "sound machines" that have an ocean type sound setting on them......



Hello QuieterBreeze , i'm agree with you, but i think that "sound machines can't take place off sound ocean. It's difficult to explain but i think there someting special that help us tu support hyperacusis. Sure after that travel, i was very tired but near the sea i was less sensitive. I know that lot of hyperacusis feels better on the beach. It would be nice to create a center for us. You know there is nothing to help hyperacusik after a trauma....

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Artnono

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Reply with quote  #39 
Quote:
Originally Posted by Debbie
Interesting that you mentioned the ocean.
It's hard to explain, but especially with biodynamic style there is a relationship between craniosacral therapy and the ocean.
What the therapist "listens" to (with still hands) is the in/out pull/push of "tides" in the body.
The therapist feels the still body holding the moving fluid.


Hi Debbie ! Unfortunetaly, this did not last... Today i feel more sensitive but i'm
convinced like you that there is a way to help us near the ocean.


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Artnono

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Reply with quote  #40 
Quote:
Originally Posted by LynnMcLaren
Yes.. Good News! ((( Smiles )))

Hope it gets better and better for you...
Glad your doing somewhat better Arnaud..


Hi Lynn,

Yes i hope we could find something  for all of us. Try AAL, for me it's just help me for crisis, but it's very important, even when 2 days after i'm sensitive again. 
we must not lose hope.

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Artnono

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Reply with quote  #41 
Quote:
Originally Posted by John7
Bonjour Artnono et bienvenue: Je sympathise avec tes tourments, croyez-moi . J`habite une grande ville plein de bruit et c'est constammnent une lutte pour me protéger. Quoique il semble que mon cas est moins sèvère que le tien. Bonne chance. Jean


Bonjour John,

Nous sommes dans le même bateau . Le problème pour moi sont les basses fréquences qui passent toutes les protections et usent l'organisme. Je crois que je ne pourrais pas habiter en ville et je sais la difficulté d'y vivre.

Bon courage à toi  John.  

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aQuieterBreeze

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Reply with quote  #42 
Hi Arnaud,

One of the things about the ocean, you may have noticed is the calming atmosphere.
Some gravitate toward the sea or ocean, others may feel a special sense of calm or peace elsewhere in nature.
The sounds and sights of nature can be very calming and soothing.
With hyperacusis it is important to be able to have some sort of ambient sound,
in the background so we are not in total quiet.
Among other reasons for that , I have read that using sound in beneficial ways helps
us reacclimate to sound. Our ears are designed to hear. They will do that in quiet surroundings as well as less quiet ones.
But in very quiet surroundings, we will likely notice all the other sounds, even fairly quiet ones- that  we may not notice as much otherwise.

Finding something in the way of sound that is soothing and calming, can work wonders, I know I've been there. Where all sounds were distracting, and the whole world seemed too loud, and I could hear sound from a long way away, and none of it seemed to be in the background, and all I wanted was silence.
But to realize that there were some sounds, (like some of those found in nature)  that actually did sound pleasing and were soothing/gentle to my ears, was important to me.

And that there was a way that would kind of bring some of the more gentle sounds of  the outside world inside (so to speak)- that I could play something, on my stereo indoors -that would sound like the outdoors,  was wonderful.
And to sit at my kitchen table, a couple years ago and  listen to a cd with some gentle sounds of nature on it,  (which was playing on low volume in another room at the time) and be able to relax, for a bit, was the beginning-
of what has been a journey for me- from seeking silence, (which was hard to find many times anyway) to trying my best to reacclimate to sound, and being able to listen to things I never thought possible again.
It all starts one step at a time, and for me, I am glad I took That one.

I don't think I would have been able to listen to the sea back then though, but we are all different in what we can tolerate.

There is another new thread here - where someone was asking about some nature sounds-
they were asking about sounds of the sea.......
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