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Posts: 10
Reply with quote  #1 
  It's me again the mom of the 10 year old boy who suddenly went from normal to home-bound with hyperacusis. Started Sep 28th 2019 during a cold, yes he has sound exposure from headphones with bad youTube videos, and some power tool use with ear protection, and a header in soccer and a bite change with braces etc. He honestly had soup of causes that might have had something to do with it. Reguardless he has it. Finally doesn't look as sick as he did to begin with, and can tolerate being some places with headphones so we are not stuck at home anymore which improves his quality of life a bit. He goes to school during reading period with sound canceling headphones with music playing in them so sees people for about an hour to hour and a half.  Otherwise school is too loud, bells, lunchroom, specials classes, just silent reading which is better than nothing. He's keeping up with all his schoolwork at home where it is quiet. 

  We still don't have a diagnosis from anyone comfortable giving one. No one has seen it where we live. We have been bounced from ENT to Nero, psychology, to well you get it. Did the CT and MRI and all normal. Nearest Audiologist trained in hyperacusis is 4 plus hours away. We are headed to Mayo Clinic in MN in February to hopefully get a care plan. Hopefully they will do enough talking between the specialists to give us a diagnosis for school and home doctors. No one here has been able to help other than giving us B2 and offering to put him on anti-depressants, and one other pain med we didn't start due to the side effects/ plus new symptoms kept popping up and if you add in more meds who knows if they are causing them.

He has had a constant headache for almost 3 months that has NEVER left or stopped  Severe sensitivity to sound. He hears things over and over after the sound stops, they echo and take a long time to fade away when they are loud. It feels like an explosion in his brain, he does not say his ears hurt, it's his head/temples radiating filling his head down his neck.

Also some other weird things like random locking joints for a day. He lost all feeling in his hands (no hot/cold, or touch sensation at all) this came back after 5 blown out IV's in our first MRI attempt, his veins were NOT having it. He had both biceps break out in a wheals rash last weekend. Like a drug allergy but he has not been on anything other than B2, and his MRI was over a week before that, kind of late for an IV reaction. 

Anyway. He has vestibular issues, but not upon hearing sound. He can't run, jump, ride in a car with bumps without discomfort. This is a kid who used do bounce off the walls. Now he runs like an old lady if he attempts to move that fast at all. Even below zero wind chill, he walks when his siblings run for the building for example. He also feels like the car is going to tip over when we turn any corners. He knows now it is not, so he is not afraid and kind of gets a kick out of it, (He was a fan of roller coasters before this) but he knows it is not normal to feel like it is going to tip over in a car. 

So I was curious if anyone knew anyone with a similar thing going on? I'd like to hear about it as I can't seem to find any vestibular issues with hyperacusis and the vestibular issues not caused by the sound. Does that make sense? 

We have started some peds OT, but they are not doing much with his sound issues, mostly working on his vestibular movement issues using some sort of headphones thing that stimulates the vestibular system while they do certain tasks. They say his hyperacuisis is different than what they have seen in other kids as many kids are ok if they are in control of the sound, its where they get overwhelmed by sound, where his is a pain response to all sounds no matter who holds the bell etc.

So yes curious if anyone has vestibular issues similar to his?

Just trying to help my 10 year old son.

Posts: 2
Reply with quote  #2 
I am so sorry to hear about your son. I had similar issues some years ago. Mine were from Lyme Disease. So I am wondering if you live in an area with this issue.
I was able to overcome the vertigo with Vestibular Rehabilitation Therapy (VRT). And the hyperacusis with TRT. Hopefully you will
get this help at Mayo Clinic.
I am wondering whether it is problematic for him to be listening to music with the headphones. I was told by an audiologist to listen to rain sounds. I have also read that listening to pink noise can be helpful.

Posts: 143
Reply with quote  #3 
It appears that your son has something going on where Hyperacusis is a symptom of the root problem. I would start with testing for Lyme Disease below are some other issues or diseases that have hyperacusis as a symptom:
  • Bell’s palsy
  • Tay-Sachs disease
  • Williams syndrome
  • Posttraumatic stress disorder (PTSD)
  • Systemic lupus erythematosus (SLE)
  • Viral infections that affect the inner ear or facial nerve
  • Ear damage due to toxins or medication
  • Temporomandibular joint (TMJ) disorder
  • Ménière’s disease
  • Multiple Sclerosis

Posts: 71
Reply with quote  #4 
Strange question, but when your son was sick, did he happen to get put on a Fluoroquinolone antibiotic? My H and a number of other issues started after taking Cipro
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