Hyperacusis Experiences?

[inkkognito]

Is there anyone else out there with hyperacusis who might be able to share their experiences? I only have a problem with sounds at a certain pitch...things like gun shots, backfiring, fireworks, and certain engine pitches (for example, the cars in Tomorrowland cause me great ear pain). Normally, I just avoid problem rides like the cars and cover my ears to watch the fireworks or the stunt show at MGM. I've discovered that hunter's headphones (the kind people wear to protect their ears when shooting) help a great deal, but I've never worn them to WDW. I always feel rather silly, but I'd love to be able to watch Illuminations and actually hear the music instead of cringing in pain with my hands clamped onto my head. I wondering...would they let me use 'em on the cars too? They do not impair my hearing; they just cancel out certain pitches. Would I need a GAC for that or could I just bring the headphone and put 'em on?
Barb

 

[HopperFan]

My son has it (along with other disabilities) and this has been a really hard year for him. It has gotten so bad he has begun having anxiety and panic attacks at the thought of having to deal with the noise issues and hence the pain. He appears to have pain throughout his whole body and therefore can not be touched. He doesn't like the things you like PLUS the many pitches of human noise - which makes going just about anywhere stressful. We went in January and it was a huge test to see if many hours of therapy (learning appropriate means of handling the pain) and anti-anxiety meds were helping. He got off the monorail only to have the ferry boat blow it's horn and he froze. Took quite some time and a nice security guard letting us in a side entrance to get him in the park. We had the headphones with us plus a cd player, the music helps to cancel out noise. He uses all of this in addition to hunter's earplugs. We were very pleased that he was able to handle the entire day wearing just the earplugs. We did leave before the fireworks - we weren't that brave. Have you tried the earplugs? Would be less cumbersome than the headphones. We never had to use the headphones, but we also had a GAC. I would guess if you just asked at Guest Relations they could tell you if you needed it or not to put them on during some of the rides. Have a great trip !

 

[SueM in MN]

I don't think you would need a GAC to use earphones on rides/attractions. I have seen people use them and have not seen them tell anyone before pulling them out. The earphones would not affect anyone besides the person wearing them.

 

[inkkognito]

Thanks...I will bring them along to MK and see how it goes.
Hopperfan, I will keep your son in my prayers. I know what it is like to live with hyperacusis (40 years of it now!), and it's rare so most people don't understand it. I probably look like a lunatic when I start running for cover every time I hear a motorcycle or loud car revving and backfiring. It's something most people don't even think about. The way I explain it to others is, "When I see someone watching fireworks with no pain, it's like watching them be able to cut themselves with a knife without any reaction." Earplugs don't work for me, but the headphones take the "edge" off the noises that bother me. I just wish they were smaller...I get really weird looks at fireworks displays.
Barb

 

[Huggles]

My daughter used to be seen watching the fireworks with hands clamped tightly over her ears and clapping with her elbows! She used to be phased by similar noises to you and also by innocuous things like hand-dryers in rest rooms, a band tuning up etc etc. We took her to a Johannson sound therapist and since then we have had no further problems. The therapist checked her hearing and then made a music tape for her to listen to each evening for 5 minutes. Follow up visits adjusted the tapes as necessary and after a year she is now reaction free! It was simple and pain free and she no longer has the sensitivity. ( I listened to her tapes and they were pleasant synthesiser type music).
Mind you, what works for one may not work for another but it is maybe something to consider if you can afford it. Hope this helps!

 

[inkkognito]

Huggles, do you know if that is related to the white noise or pink noise therapies? I have done some research but was unable to locate a treatment center near our home. Now that we've moved, I did see one center but have not contacted them yet. I am VERY open to trying any sort of treatment. Before the internet, I didn't even realize that treatment options existed. As a child, my mother just told me I was weird and to "deal with it," so until I reached adulthood, I never even knew that it was a specific condition.
Barb

 

[Huggles]

No, it isn't a white noise or pink noise therapy, it specifically targets deficient or over stimulated frequencies by use of music.
I spelled Johansen wrong in my original posting ( this, obviously) is the correct way if you want to try a web search.
If you have a look at www.johansensoundtherapy.com website it tells you a bit about it but it relates to the UK only, I think. However it does state that the therapy is called Hemisphere Specific Auditory Stimulation in North America and refers to another site www.dyslexia-lab.dk . That website (dyslexia...) is in Danish but there is a translation available and recommends that you contact BDRL ( all explained in the website!) for a local practitioner. As I say, it may not work for all , but we were lucky and it has made a tremendous difference to our daughter.
Good luck, and if I can be of any further assistance just post here and I'll see what I can do!

 

[Huggles]

I have just done a search based on Hemisphere Specific Auditory Stimulation and have loads of hits. They all state that it is for hearing and language problems plus other conditions but not specifically for hyper sensitivity. I can only suggest you ask the practitioner if it would address your difficulties when/if you find one in your area and before you spend money on it!

Good luck.

 

[inkkognito]

Thanks!
When I contact the specialist, I will be sure to mention it. I'm willing to give just about anything a try. I might have a good chance for success because it is only very specific sounds/frequencies that I react to. I feel sorry for the people with hyperacusis who react to a very wide range of sounds; that has to be miserable.
Barb

 

[HopperFan]

And therefore difficult for the entire family. My son is 21 however functions more at a 5 year old level on average. His language skills are minimal. He began having issues when a child came into his special ed class that did not speak but made horrible animal like noises. He then had a tumor in his ear removed and prosthesis inserted (w/out he would be deaf) and then it got worse. He is now terrified of fireworks, fire engines, leaf blowers, sudden noise, sudden laughter, human noise, school bus, lawn mowers........but the human is the worst because that has led to the panic going to the mall, movies, parties, and the end all this year SCHOOL. It got so bad he is only going half days. That helped reduce his stress factor. But he can no longer go to job site and misses out on half the community involvement. Today I had to pick him up at their trip to the park because the bus ride was so upsetting she didn't want to put him back on. (oh, yes I have to drive him to and from school) He doesn't understand like you do to "run for cover", he freezes. Then the pain and anxiety escalate until sometimes he has a full blown physical panic attack. Because of the pain he shouldn't be touched or he will push or hit you away from him. It is devastating to see him in this much agony. I had one child a couple years ago and have a totally different one now, that will have great difficulty finding a place in this world as an adult. It has been so hard to make everyone understand what he is going through. They just don't. He doesn't even understand. And the reality is he may be with us forever now. He hates to leave the house and can only be home for less than an hour alone, and I just don't know how we will function as hermits.

Inkkognito, I understand your pain, I watch it everyday. He did go through therapy for months to help him appropriately react - ask for ear plugs, ask for headphones, ask to leave the location and that is improved............Our doc discussed the noise therapy, but no one around here does it and as it was explained to me..... it would be white noise in an hearing aid type device that he would have to wear for 8-10 hours per day for at least a year and it would be at least $5000, probably not paid by insurance, plus travel. And the success rate is low.

We are going to get him the Bose headphones which I am told by many are far beyond anything on the market. They are $300 and much smaller than all the others, and they fold up. Doctor also suggested these and other possiblities but he didn't think anything would truly cure it, was a matter of learning how to deal with it.

Hope you have a magical trip ! My son lives for Disney World and anything Disney, the possiblity that he couldn't go again was just unbearable. We think he reached down and pulled out everything he had to enjoy his trip !

 

[Huggles]

The Johansen therapy was very pleasant. She listened to a tape just before she went to sleep at night and referred to it as her 'relax tape'. It was nice music and only lasted about 10 minutes at the longest spell.
It was explained to us that at first she could become a bit distressed as she was having to deal with the frequencies she didn't like, although they were being 'concealed' within music. We were very fortunate and had no negative reactions . The difference after a year was amazing. Well worth the outlay.

 

[inkkognito]

Be cautious with the Bose headphones. They only block out certain sounds, which makes other sounds more clear. For example, on an airplane, they block out the engines but you can hear the conversations around you very clearly. I tried them with motorcycles and that was a BAD move...I could hear them better than ever because the headphones blocked out the ambient noise. My husband ended up taking over the headphones to use with our DVD player on airplanes. The hunter ones seem to work differently, probably because they're made specifically for a gunshot-type pitch.
Barb

 

[riu girl]

I have nothing to contribute to this thread (I didn't even know what it was until I read the first post) I just wish I could give you a hug right now Hopperfan. It looks like you are going through a very difficult time with your son. I wish there was something I could do to help.
You and your family will be in my prayers tonight. I truly hope that your son will be able to continue to visit WDW.
Suzy V.