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Teens who get pain from environmental stimuli

Nov 17, 2016 8:35 PM

Hi I'm Tiffany I'm 12 I get pain from sound I'm looking for other people that get pain from environmental triggers such as sound light smell etc. I do not go places or do things because of the pain from sounds I go to a school for kids with special needs and my parents have to turn everything off at the house. I don't go outside for the family gatherings my parents have had to sound proof my bedroom I were ear protection the few places that I go even inside my house I sleep in a closet with the bedroom door shut and the closet door shut. Sound causes me pain on my frontal and temporal lobes and causes me to have hyperexplexic episodes and seizures

Nov 17, 2016 10:46 PM

Am so sorry you are dealing with so much at a young age. I have trouble with sensory overload but that's nothing like what you are describing. What have your doctors said and are they coming up with some plan of action? I was 12 when I had "growing pains". I will be 57 next week and still have them. So I do know how hard it can be to deal with a chronic health issue at such a young age.

Nov 17, 2016 10:58 PM

I have shared this with others when I go into hiding (or rather find a quiet place in nature to just go and sit).

Nov 17, 2016 11:57 PM

Hi Jemma and welcome to the family. I'm soo sorry you're having to go through all this and at such a young age.
I do hope you're able to find things that help and support you thro this rough time.
Sending you positive vibes and healing hugs xx

Nov 18, 2016 12:54 AM

Mimikay that's the first time I've seen that and I've never really thought about it but some of that really hits home.....
Strong smells (nice or nasty) give me terrible headaches that includes if someone near me is wearing heavy perfume. I can't go into the perfume shops, body shops or soap shops. If the shop has strong smells I can't even walk past the door of the ship without it affecting me.
A lot of noise confuses me and if someone is trying to talk to me I can't hear them.....their voice just blends in to all the other noise and sometimes it doesn't matter what I try if there's too much noise it all blends together and I start together get really uptight and panicky, I can't process anything. At home or in the car I'd rather have silence as background noise irritates me....it more than just irritates me but I can't find the right words to describe it and I actually find at times the ringing I get from my tinitus quite soothing (I know I'm weird!!! Lol).
I never associated things like that as a symptom....I'm seeing my GP in a couple of hours I'll see what she says (even tho she doesn't think I have any other underlying issues!).

Thanks for sharing that Mimikay xx

Nov 18, 2016 2:02 AM

You're welcome hun. You know - the phsych doctor they sent me to when I was trying to get disability asked me questions like how do I feel in crowds, in stores, in people's homes (I was a home health nurse in what I refer to as my previous life). Those questions got me to thinking and him to add a phobia to crowds in his disability report. He said I had enough health issues that I should be approved but he spent a good hour in my 3 hour visit going over different questions that could lead to a diagnosis of different phobia's. (smile) he said the more issues he could list the better my chances. I had a few phobia type issues that I had always thought of as just my idiosyncrasies. Hope your appointment goes well.

When I was running my own forum I became friends with a woman who had chemical sensitivities. Forget the name... I wonder if some people have that but don't think to talk to knowledgeable doctors about it.

Ok. I need sleep. Someone please send Mr. Sandman my way of you see him. I think he lost my address.

Nov 18, 2016 5:34 AM

Hi Jenna, how awful for you. My son has sensory issues as well. Not as severe as yours. I have also developed sensory issues along with my fibromyalgia.
Are they able to provide you any sensory integration at school? Or is it too much to handle in that environment?
My son just did this listening therapy this past spring ... Unfortunately it is expensive but has help him greatly. It's called AIT .. auditory integration therapy.
It basically rebalances your listening input through listening to especially altered music. It was 2 listening sessions per day for l0 days.
I feel that this is something worth remembering. There was a young man doing the listening sessions at the same time.
He first did this therapy when he was 18. At that time he was having to stay in his dark bedroom and it was painful to blink. It helped him overcome this and more... He feels that most likey he has aspergers.
There is a great Facebook page called autism discussion page, it has been the only place that seems to understand this sensory challenges and may at least help you explain it to others.
Sensory issues such as your own are not understood and impacts people's life greatly.
Does touch or pressure bother you? I found it helpful at times to squeeze my son and to give him that sensory input to try and balance the sound input about to happen ... Like kids screaming in his school van ... Again most people don't get the distress this causes even his specialized teachers sometimes ... OK. Most times fail to understand this fundamental issues for him.
Wish I had something more helpful to suggest. Some people use natural scents to help calm the nervous system ... Lavender and such ..

Quiet hugs to you ... Hope your day isn't too overwhelming.

Take care.

Nov 18, 2016 6:02 PM

hi I'm wondering if there are any people close to my age that have the same problem as me thanks for being so kind everyone

Nov 18, 2016 7:15 PM

Have you been tested for Lyme disease? I've heard of people who have Lyme disease battling this. I'm very affected by noise but it doesn't cause me pain. It just overwhelms me.
Also do you have PTSD? That can cause issues with sound.

Nov 18, 2016 7:19 PM

I have been tested for Lyme and it came back negative and no I don't have PTSD

Nov 19, 2016 9:42 AM

Thats good. I hope you're able to find some answers that leads to some relief.

Nov 20, 2016 8:01 PM

Hey Jemma I'm 17 and I have fibromyalgia which has sensory overload as a symptom. I get pain from smells specificly but not too severe. Light and sound just affect my mood. You can message me if you'd like to talk :)

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