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MusicalMommy

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Hello,
   Newbie mom here. My 10 year old was a normal, school loving, soccer playing, WWE hopeful, future stunt double. He came down with a cold after a soccer game, short fever, headache, sinus congestion, aches. The headache never went away. The Hyperacusis started in a few days later, but he didn't know how to explain it at first. We were just loud.

Antibiotics, Steroids, CT, Titers, all clear.

He finally was able to explain that every time he heard any sound it felt like an explosion in his head. It starts on the left by his temple and creates a chain reaction and then the right side gets mad and joins in too so he hears it again, and sometimes more than twice but that is still hard for him to explain. It fills his whole head and goes down his neck.

At his worst before we figured out it was sound, he was in bed tears rolling down his cheeks not even able to stand his own voice. 

We figured out it was sound and I found information on Hyperacusis and I instantly turned our house of 5 loud family members into the quiet place. He seems to do better when he is NOT exposed to sounds. The more sounds, the  more miserable, fatigued, and in pain he is.

The pain does not stop when the sound stops. 

He also has issues with any jolting movements. Walking is ok, but no running, jumping, tumbling. Even rides in the car when we hit bumps are uncomfortable and cause in his words... "My brain vibrates and it makes me queasy feeling." 


He has now for the most part been homebound for a month. Unable to attend school, doctors unable to diagnose him so far because it is "out of their area" 

Everything is too loud. We saw a horribly rude ENT this morning and an Ignorant Audiologist who . Came out only knowing his LDL's because I demanded they test them.

He is 34 in one ear and 45 in the other. 

We see another ped ENT tomorrow who we hope has the decency to not talk loud when I ask him to quiet down, or can at least give us SOME sort of direction or help. We have had nothing for a month. Can't even get a doctor to sign school paperwork to get him a tutor. 

Neurology is Dec. 9th. He is lonely, is expressing that he wants to die, which counselor said is due to chronic pain expression, not because he has a plan.

I am an exhausted advocate hoping for some support. It is one month to the day now that he got that cold. We are tired. We are scared, we are sick of being looked at like we are crazy by doctors. 

Hoping the ENT tomorrow will at least diagnose him, and we don't have to wait until Dec. to see the Neurologist. 

I am just looking for someone with a kid who has gone through something similar. Advice, encouragement etc. I think we are on the right track. I am trying to advocate for him as he is not the greatest advocate. 

We are in Eastern South Dakota. 


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Rob

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Reply with quote  #2 
Mom,

I hope you have a better experience with the ENT you are consulting tomorrow.  Perhaps you could request they administer another LDL test to your son.  If your son is diagnosed with hyperacusis, the condition is treatable and he can go on to live a perfectly normal life.  Don't give up hope. 

Rob   


 

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MusicalMommy

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Reply with quote  #3 
Quote:
Originally Posted by Rob
Mom,

I hope you have a better experience with the ENT you are consulting tomorrow.  Perhaps you could request they administer another LDL test to your son.  If your son is diagnosed with hyperacusis, the condition is treatable and he can go on to live a perfectly normal life.  Don't give up hope. 

Rob   


 



Why do you suggest another LDL? I thought anything below 60 was severe hyperacusis. His tolerance is that low when I look at the chart of sounds how loud they are. It’s what he can currently stand. He can’t even tolerate standing outside the house without pain.

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Aplomado

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Reply with quote  #4 
Most people get hyperacusis after loud noise exposure.  Your son's hyperacusis apparently has a different cause...

The explosion thing is something I have no heard of before.

Most ENTs know nothing about hyperacusis; but "possibly" since the cause of your son's hyperacusis is apparently atypical, one might find something to address... hopefully.

A neurologist sounds like a good idea.

Sounds like you are doing the right thing.

If the ENTs don't find the cause, you should take him to an audiologist that specializes in sound therapy (TRT) and get some help addressing the hyperacusis.  Wearable sound generators and pink noise enrichment may help.
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Rob

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Reply with quote  #5 
I suggested another LDL from another clinician because it doesn't sound like you had any confidence in, or a good experience with, the clinician who examined your son.  

Rob
            
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MusicalMommy

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Reply with quote  #6 
Quote:
Originally Posted by Aplomado
Most people get hyperacusis after loud noise exposure.  Your son's hyperacusis apparently has a different cause...

The explosion thing is something I have no heard of before.

Most ENTs know nothing about hyperacusis; but "possibly" since the cause of your son's hyperacusis is apparently atypical, one might find something to address... hopefully.

A neurologist sounds like a good idea.

Sounds like you are doing the right thing.

If the ENTs don't find the cause, you should take him to an audiologist that specializes in sound therapy (TRT) and get some help addressing the hyperacusis.  Wearable sound generators and pink noise enrichment may help.


I’ve done a lot of reading over the past month and some other contributing factors include, a virus. TMJ due to orthodontics, a bump on the head, ototoxic drugs and tinnitus. All 4 things he had within the week this started. Could have just been the perfect storm. He doesn’t pinpoint a certain sound exposure just woke up this way. But he was a YouTube gamer watcher with headphones and I know sound maxed out mics on the videos is often not a good combo for headphones. No more headphones for that here. Also learned through this, that he has had tinnitus for as long as he can remember, he didn’t know it wasn’t normal. First specific situation he was able to recall was ringing when the class got too loud in Kindergarten, his ears would ring for a few minutes after the sound stopped, now they never stop. He didn’t know that no one else could hear the ringing. He just thought that’s what everyone’s hearing was like.

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MusicalMommy

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Reply with quote  #7 
Quote:
Originally Posted by Rob
I suggested another LDL from another clinician because it doesn't sound like you had any confidence in, or a good experience with, the clinician who examined your son.  

Rob
            


Yes I wasn’t too impressed, especially since he asked “What’s with the white flakes in his ears?” I had to explain to him that East Asians and Native Americans have white flakey earwax. It’s normal. Ignorance.
If you look in ears everyday you should know this. His earwax and levels of it are fine and normal confirmed by multiple doctors.
He also didn’t ask us anything before trying to toss my son into the chair to give him a regular hearing test, and wasn’t going to do LDL. This was my fear, and it happened.

Yes, my problem is in our area I can’t find anyone who has any clue what to do.

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MusicalMommy

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Reply with quote  #8 
Quote:
Originally Posted by Aplomado
Most people get hyperacusis after loud noise exposure.  Your son's hyperacusis apparently has a different cause...

The explosion thing is something I have no heard of before.

Most ENTs know nothing about hyperacusis; but "possibly" since the cause of your son's hyperacusis is apparently atypical, one might find something to address... hopefully.

A neurologist sounds like a good idea.

Sounds like you are doing the right thing.

If the ENTs don't find the cause, you should take him to an audiologist that specializes in sound therapy (TRT) and get some help addressing the hyperacusis.  Wearable sound generators and pink noise enrichment may help.


The explosion thing my son describes is very similar to how this guy explains his pain.

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Rob

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Reply with quote  #9 

Mom, 

From what you describe, I think his decreased sound tolerance is due to exposure to loud sound that, over time, was too much for his auditory system.   I don’t think his decreased sound tolerance is due to a virus, TMJ, medication, or tinnitus.  It doesn’t sound like he is bothered or troubled by his tinnitus, which is a good thing. 

There are steps you can take so your child no longer experiences sound as too loud and no longer feels pain afterwards.  The most important thing you can do to help your child is to find a clinician who has experience diagnosing and treating folks with decreased sound tolerance.  If there is no one in your area, be willing to travel.  My other suggestion, based on my own experience with hyperacusis and ear pain, is to get him back to school, as counterintuitive as that may sound.  The last thing anyone with decreased tolerance needs, and the first thing that seems natural to do, is to avoid sound.  Avoiding sound as he is doing will make him more, not less sensitive to sound.   Perhaps the school can work with you to make accommodations for him? 

Rob

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Aplomado

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Reply with quote  #10 
Quote:
Originally Posted by MusicalMommy


 TMJ due to orthodontics, 


Hyperacusis caused by jaw issues is not common but it does happen... that may be something to look at.  You could see if a mouth splint is helpful.  Just an idea.
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DanMalcore

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Dan
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Reply with quote  #11 
I see no qualified clinicians in South Dakota.  The closest clinicians you might consider who have been trained to treat hyperacusis from Minnesota:

Eleanore Wagner, M.A. CCC-A
Hearing Center at Park Nicollet Clinic
3800 Park Nicollet Blvd.
St. Louis Park, MN 55416
952-993-3444
952-993-1250 fax
wagnee@parknicollet.com

Samira Anderson, AuD
Allina Medical Clinic Northfield
1400 Jefferson Rd.
Northfield, MN  55057
507-663-9000
507-645-2096 fax
also
Allina Medical Clinic Fairbaut
639 SE 1st St.
Fairbault, MN  55021
507-334-5915
507-332-6683 fax
samara.Anderson@allina.com

Paula Schwartz, Au.D.
Doctor of Audiology
Tinnitus and Hyperacusis Clinic
Audiology Concepts
6444 Xerxes Ave. South
Edina, MN 55435
952-831-4222
952-831-4942 fax
plschwartz@msn.com
http://www.tinnitusclinicminnesota.com
 

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Margy

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Reply with quote  #12 
Hi. I live in eastern Nebraska, and I can relate to the lack of expertise in your area and mine. It’s probably not going to do anyone any good to go to a random ENT or neurologist. I hear there is a good clinician in Minnesota that may be helpful. Look on the list of people experienced in TRT. That’s my best advice, mostly because any other doctor would be a waste of time and energy.

Your description of your son’s symptoms sounds pretty familiar to me, since I’ve had hyperacusis for five years. As far as I know, mine was due to multiple factors: dental surgeries, pain from those, neck issues, and maybe a virus that coincided with all of that. Plus a growing sensitivity to noise which made noises increasingly a problem, even though I didn’t have a noisy life. The noises around me just got increasingly troublesome.

Medical science still doesn’t understand this issue, but some select doctors could help.

Oh! I see that Dan has a list of people in Minnesota. The one in Edina is the one I’ve heard good things about. But that was a while ago, so I don’t know about the others. Ask if they have had a lot of experience and success treating hyperacusis.
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MusicalMommy

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Reply with quote  #13 
Quote:
Originally Posted by DanMalcore
I see no qualified clinicians in South Dakota.  The closest clinicians you might consider who have been trained to treat hyperacusis from Minnesota:

Eleanore Wagner, M.A. CCC-A
Hearing Center at Park Nicollet Clinic
3800 Park Nicollet Blvd.
St. Louis Park, MN 55416
952-993-3444
952-993-1250 fax
wagnee@parknicollet.com

Samira Anderson, AuD
Allina Medical Clinic Northfield
1400 Jefferson Rd.
Northfield, MN  55057
507-663-9000
507-645-2096 fax
also
Allina Medical Clinic Fairbaut
639 SE 1st St.
Fairbault, MN  55021
507-334-5915
507-332-6683 fax
samara.Anderson@allina.com

Paula Schwartz, Au.D.
Doctor of Audiology
Tinnitus and Hyperacusis Clinic
Audiology Concepts
6444 Xerxes Ave. South
Edina, MN 55435
952-831-4222
952-831-4942 fax
plschwartz@msn.com
http://www.tinnitusclinicminnesota.com
 


Yes, unfortunately this list appears to be over 16 years old as the Dr.Samara Anderson has not worked in that office in over 16 years according to the receptionist. One number is disconnected. Does anyone know of any more up to date lists?
I’ve made one appointment with the clinic at the bottom, but they don’t take insurance at all, and it isn’t until end of November. Called the other one and got a message back, but not from that doctor, so I’m not feeling super confident in this list. If it might be 16 years old. 😬 There has to be more options right?

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Aplomado

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Reply with quote  #14 
I am glad you are making an appointment.  Please keep us informed.
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Rob

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Reply with quote  #15 

I have heard only good things about Dr. Paula Schwartz.  She is an excellent choice.  The address
shown above is current, although their phone number may have changed.  Here is what I have. 

6444 Xerxes Avenue South
Edina, MN 55423
Phone: (952) 224-0308
Fax: (952) 831-4942

I believe Dr. Schwartz works in the Edina location -- this clinic also has a location in Burnsville -- so if you haven't done so already, you may want to verify. 

FWIW, I would try to hang in there till the end of the month and not make any appointments with other local ENTs or neurologists. 

Samira Anderson is no longer in Minnesota.  She's in the Department of Hearing and Speech Sciences at the University of Maryland.  Her contact information is:

Phone: (301) 405-4224
email: sander22@umd.edu


Eleanor Wagner's contact information is:

3800 Park Nicollet Blvd
St Louis Park, Minnesota 55416-2527
Phone: (952) 993-1250




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MusicalMommy

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Reply with quote  #16 
Quote:
Originally Posted by Rob

I have heard only good things about Dr. Paula Schwartz.  She is an excellent choice.  The address
shown above is current, although their phone number may have changed.  Here is what I have. 

6444 Xerxes Avenue South
Edina, MN 55423
Phone: (952) 224-0308
Fax: (952) 831-4942

I believe Dr. Schwartz works in the Edina location -- this clinic also has a location in Burnsville -- so if you haven't done so already, you may want to verify. 

FWIW, I would try to hang in there till the end of the month and not make any appointments with other local ENTs or neurologists. 

Samira Anderson is no longer in Minnesota.  She's in the Department of Hearing and Speech Sciences at the University of Maryland.  Her contact information is:

Phone: (301) 405-4224
email: sander22@umd.edu


Eleanor Wagner's contact information is:

3800 Park Nicollet Blvd
St Louis Park, Minnesota 55416-2527
Phone: (952) 993-1250






The appointment I have is with Rachel Allgor at the Edina clinic,   Dr. Schwartz isn't there anymore either.

So this whole list of approved people to contact on this website for MN anyway is pretty much awful.

I also was passed on by Dr. Anderson's old office, to try to contat Dr. Laura Morrison with the Stillwater Med Group. 


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Rob

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Reply with quote  #17 
I just learned Dr. Schwartz has retired. 
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TamiW

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Reply with quote  #18 
My heart and prayers go out to you. I have this as well, but I am a 45 year old woman and I can't imagine having this as a child. I'm not even about to try to tell you what caused this, but I will share with you what is helping me cope with living in this new bubble while I'm waiting to see if I'm a candidate for Dr. Silverstein's surgery.

1. I try to focus on my other senses: what am I smelling? seeing? tasting? touching? 
Can he go outside at all? I retreat to the woods often: the sights in nature are calming. Something as simple as seeing a deer takes my mind off of the horrible discomfort in my ears. At home I keep scented wax simmering. I pet my dog often. These are not cures: they are good distractions.

2. I've learned not to use headphones AT ALL! When I first got this I used headphones and "white noise" to cover up sounds in stores, car engines that go by my house, etc.. This made my ears worse and cause bad tinnitus. I do, however, have 5 fans going in my house at all times so that the white noise blocks some of the outside noise.

3. I was once a musician, a part-time DJ in fact. My mantra was "the louder the better." Now, I can barely tolerate any music at all. I'm guessing that your son can't either. I can, however, stream calming spa videos and meditations on YouTube. I listed to "Yellow brick Cinema" and "OCD Calm". They have tranquil music with low tones. It tends to calm me.

4. I journal every day. Each day I try to find 1 thing that made me happy. I can't imagine how hard this would be for a little boy, but if he can muster the strength to find just one thing that made him smile or he enjoyed during the day, this will help with the feeling of not wanting to live. I had those feelings as well. Though I'm not suicidal, I have had this for a year and on many occasions I felt as if I no longer wanted to live. I even wished at times that I were deaf. 

5. The loneliness is awful. There is something so lonely about having an invisible illness that nobody seems to understand. Why not just put on headphones? It's just noise, why are you letting it bother you? And other comments from pure ignorance come from so many people. They just don't understand. Your son is lucky to have you and his family. I have a big family and a lot of friends as well. But I can't be around them. They are "too loud." Even my soft spoken friends are just too loud for me to have around in groups of more than 1 or 2. I can handle just one friend visiting as long as they speak in a low voice and they turn off their cell phone. Maybe your son can do the same? This does help a lot with the loneliness.

I pray that you find answers and that your son is better soon! Sending a big hug! -Tami
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cozo

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Reply with quote  #19 
Please try white noise wearable sound generators I’ve got Hypercussis I’ve also had the operation for it it one ear , but still suffer in the other ear but the generators take time but train your brain to deal with sounds again takes time tho .
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cozo

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Reply with quote  #20 
Please join the FaceBook page call
HYPERCUSSIS SURGERY SUCCESS TALK, . Lot of information on it . Good luck ya not alone x

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