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SpockNL

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Posts: 2
Reply with quote  #1 

Hello, my name is Jeroen, from the Netherlands.

Since 1994 I know I’ve got Gilles de la tourette. It’s not just that, sounds from nose and mouth, except talking, hurt. So if someone blows there nose, I hear it harder than other people and it makes me crazy. After a few times I hear the sound I can get really pissed off. When I’m in a room with no background noise I wear a MP3 player with Shure E2c in-ear monitors. It helps a little bit, but you understand I can not wear the in-ears everywhere. At school I have then in my ears, in the bus, in the lunch pause too. It’s hard because I miss some parts of school and I can see that back in my rapport. Last year I didn’t make it because I missed to much of the lessons so I didn’t know enough for exams.

When I wake up I walk to the bus where I put the in-ears in. They are turned on the whole way to school, and in school also. When I come home I can take them off, because I have a very big room for myself with a nice radio so I don’t hear my family. My father hurts me the most with his sounds. When he sniffs I get from a scale from 0 to 10, he gives me a 7 when he is doing the hardest he can. At 10 I am so mad at him that I can’t do anything anymore. Other people hurt no more than 1 or 2. It seems like some persons that I know better, they hurt me more.

At home I’m most of the time alone. At school too, and in the bus, I like it to sit alone in stead of in a group with friends.

In Groningen I go to therapy where I learn how to deal with this sort of Hyperacusis. A few weeks ago I asked him if he knows other people who have this. I know some people who have tourette but no one of them has this Hyperacusis. So I went searching on the internet and found this forum. In Holland are no forums like this, just about autism and tourette but non of the members recognizes my description.

Is there someone here who has the same as me? How do you handle the sounds. For so far the Shure in-ears work good but after 8 hours in my ears they are not comfortable anymore. I’m going to buy the UE10 Pro in-ears, it is an expensive solution but it works. Does anyone here know other things to make the pain and irritation less?

 

Greets Jeroen.

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StillWaters

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Posts: 25
Reply with quote  #2 

I don't have Tourette's but am an Asperger.  When in my teens, both the sight and the sound of my dad tapping with his fingers on the table drove me wild.  As did people's eating noises. 

 

I am also shocked at anything visual that is anomalous.

 

As I live alone now (at age 51) I suppose I avoid a lot of unwanted stimuli but people on trains when I travel can have habits that get to me a bit.  I try to narrow my angle of vision by letting my eyelids droop.

 

My ear conditions were worsened by my working premises and after a spell off sick I hope to get back there soon, and there will be discussions about that.  My income is down to zero and when I am in "overload" I like to have my space and time to "chill".

 

I am hypersensitive to chemical smells also.

 

I've very little to tell you that is of direct use to you.  I hope the support systems that are there will prove truly effective for you. 

 

I hope the others will have things to share with you.

 

As my Dutch friends used to say to me when I was learning Dutch,

 

"Groente aan uw tante"

 

and

 

"Uitgeslapen?  Dan kun je je bed verkopen!"

 

For the other's benefit that means, firstly, a spelling mistake in the word for "greetings" so that it reads "cabbages to your auntie" and, secondly, a joke: "Had a good sleep?  Well you can sell your bed then can't you!"

 

My bed is my "chill" zone (when there's no noisy traffic outside) so good job I didn't sell it.

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Leah

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Posts: 789
Reply with quote  #3 
Hi guys, I'am up by Lake Ontario in the Great Lakes of Canada.

I have read that Tourette's if I remember correctly has a connection to the additives and colors and flavours used in processed foods.

Have either of you guys tried a Q-Link at all?  I mean just because I just brought one I'am definately NOT pushing this on people because I've had noise sensitivity since 96 - also hard of hearing.   HYP is  connected to Electrical Sensitivity and it's logical when you understand how the ears work, but it's connected to Environmental Sensitivities too, many sensitive to chemicals also just happen to be sensitive to noises too.

I was also watching a program on the Hospitals in the Netherlands, that was such a good show, but I'am so aware how the ENT's clam up and deny anything they know too.........

The Clarus Q-Link is made with plastic, while the BioPro Q-Link is made with Stainless Steel, so it's a better conducter.  The BioPro Technology also has similar Graham Stetzer Filters called Home Harmonizers which are cheaper, but you still would probably do best with about 4 for the house .
I'll just attach the reading material you can look into on your own and discuss between you:

Graham Stetzer Filters and ES:
http://www.getpurepower.ca (or com)
http://www.dirtypollution.ca (or com)

BioPro Technology Q-Links, Home Harmonizers, etc:
http://www.emf-health.com/bio-proresearch.htm
http://www.emfbalancehome.com/page4.html
http://emf-health.com/blog/

For me it's made a healthy difference, but the effect of the toxicity the ES has done on our bodies and ears, well I mean that in itself should be worth teaching University students in just one year.






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SpockNL

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Posts: 2
Reply with quote  #4 

Hmm... I don't have so much options for help here, i know nobody elke who has this, and there are no doctors here who know about this.

The one where i go now is not specialized in hyperacusis but i have learned some things to make the pain less, of to win some time before i get to the point that I really have to leave the room so I won't hear the sounds of other people.

 

Stillwaters, do you live in Holland as well?

 

Leah, do you have hyperacisis? And what have GSM's in comment with hyperacusis, or do I read wrong?

 

Time to chill, chill is something taht you do in a room with no sound? Any place with no sound is scaring me, that's just because i can hear the sounds that hurt better than a place with background noise.

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StillWaters

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Posts: 25
Reply with quote  #5 

No I live in UK but I spent some time at Utrecht.

 

I hope things go well for you, my symptoms get better (without going away altogether) the quieter the surroundings get.

 

However they are seldom really quiet.

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