Misophonia?

[HappyGal]

My daughter was diagnosed with Misophonia when she was 9. Misophonia is a fight/flight reaction to certain sounds. Yawning, coughing, clearing throats, blowing noses are all triggers for her; causing tremendous stress/anxiety. We've tried several medications and now have one that seems to help a little. She just tuned 11 and has lost all her friends (everyone is afraid to make a sound in front of her b/c she gets so angry). Other kids make the noises on purpose to get a rise out of her.

The worst part about it that she feels like the only one that has Misophonia. Does anyone have any knowledge/experience with this?

 

[LockShockBarrel]

I have several of the same triggers. Lippy smacky noises and loud eating drive me absolutely mad. It got worse in my teens as my depression got worse. I was never medicated for it or treated for it because I figured it was just a quirk. I was always able to distance myself from the noise or I could distract myself with fidgeting. Now it seems very specific where my cats grooming and my mother snoring are the 2 things that trigger me the worst and I do get into that violent mindset over it.

I only recently heard about it as far as it being an actual issue that other people have (not just being annoyed by the sound but the guttural response to it)

 

[lanejudy]

Interesting! I've never heard of misophonia...but DD9 absolutely freaks out when someone coughs. It's so bad that if one of us happens to have a little coughing fit (swallowed wrong or something simple like that), she ends up in a full-blown meltdown and I have to hold her and rock her to calm her down. I'll have to research this, thanks for posting!

 

[clori]

is misophonia the same as hyperacusis?

 

[HappyGal]

Interesting! I've never heard of misophonia...but DD9 absolutely freaks out when someone coughs. It's so bad that if one of us happens to have a little coughing fit (swallowed wrong or something simple like that), she ends up in a full-blown meltdown and I have to hold her and rock her to calm her down. I'll have to research this, thanks for posting!

Age 9-10 is when it usually starts. For my daughter it was yawning that annoyed her but then it got worse, like you said - meltdowns. Then another sound would start to bother her - nose blowing. In fact If anyone has to blow their nose we have to go into the garage or upstairs into a bathroom on the far side of the house. We tried cognitive therapy to give her tools top cope with the sounds but that didn't work. We tried several medications and I found research on the use of trileptol. She's been taking that for about 4 months and she says it helps she still gets upset but to the degree as before the medication. Her teachers and school counselor set up a 504 plan for her so she can take tests in a quiet are (her grades we slipping b/c she couldn't concentrate on work but rather focused on the sounds. From what I've learned - it seems like the best thing someone suffering from Misophonia can do it leave the area, get away from the sound. And it is, unfortunately, something will have to live with the rest of her life.

 

[HappyGal]

is misophonia the same as hyperacusis?

Here is a great explanation of the differences:http://www.minnesotamedicine.com/PastIssues/PastIssues2011/November2011/HyperacusisandMisophonia.aspx

 

[Schmeck]

How about noise cancelling headphones to help her through the tests, so she doesn't hear someone out in the hallway, etc?

Or if she's at home and someone is coughing, she could put the headphones on so she doesn't have to have the guilt of driving people away? I'm sure that must bother her too, that people can't even sniff or sneeze?

 

[LockShockBarrel]

But it doesn't make sense to wear headphones when it's a split second or very short sound that happens randomly.

 

[HappyGal]

There are 34 students crammed in her small classroom so you can imagine the amount of yawns, coughs etc. She was allowed to wear ear plugs for testing but was not allowed to wear anything that covered her ears. The plugs didn't work, she heard all the trigger sounds because the testing environment is so quiet. There are devices that look like hearing aids that pump white noise into the ears but those are $1500 EACH.

And noise cancelling headsets to put on when someone starts coughing or yawning wouldn't work because as soon as she hears the beginning of the sound she focuses only on that sound even after it has stopped. And even if she can't hear the yawning, coughing etc, just seeing the action is a trigger.

At Disney we bring headphone so she can listen to music when in crowded lines. Also, we are going to stop taking the buses because when we head to the parks for rope drop - everyone is tired and yawning. When we leave at night - agian more yawning. I'm hoping that driving to the parks will help.

Also considering getting the DAS card so we can avoid the crowded lines and instead stand in the more open space with wheelchair guests.

 

[OurCrazyLife]

Age 9-10 is when it usually starts. For my daughter it was yawning that annoyed her but then it got worse, like you said - meltdowns. Then another sound would start to bother her - nose blowing. In fact If anyone has to blow their nose we have to go into the garage or upstairs into a bathroom on the far side of the house. We tried cognitive therapy to give her tools top cope with the sounds but that didn't work. We tried several medications and I found research on the use of trileptol. She's been taking that for about 4 months and she says it helps she still gets upset but to the degree as before the medication. Her teachers and school counselor set up a 504 plan for her so she can take tests in a quiet are (her grades we slipping b/c she couldn't concentrate on work but rather focused on the sounds. From what I've learned - it seems like the best thing someone suffering from Misophonia can do it leave the area, get away from the sound. And it is, unfortunately, something will have to live with the rest of her life.

Has she had any reactions or complications with the medicine? Dr just wrote us. Script for that med to help with anxiety for daughter.

 

[HappyGal]

The only thing I can tell is an increase in her appetite. It doesn't make her drowsy or interfere with her sleep.

We started out at a very low dosage of 300mg twice a day. After 2 months we increased it to 450mg twice a day. After about 5 months we increased the dosage, now she takes 600mg twice a day. She says she can tell it's working for her!

 

[ErinTwinmom]

If the cues are both auditory and visual I might consider a small tablet or even a book with her headphones. If her attention is focused in another direction while waiting she should not see as much, also she might feel more comfortable in head phones if they were obviously attached to some form of media.

 

[HappyGal]

If the cues are both auditory and visual I might consider a small tablet or even a book with her headphones. If her attention is focused in another direction while waiting she should not see as much, also she might feel more comfortable in head phones if they were obviously attached to some form of media.

We never go anywhere without her headphones and itouch (music and games).

 

[Schmeck]

My daughter was diagnosed with Misophonia when she was 9. Misophonia is a fight/flight reaction to certain sounds. Yawning, coughing, clearing throats, blowing noses are all triggers for her; causing tremendous stress/anxiety. We've tried several medications and now have one that seems to help a little. She just tuned 11 and has lost all her friends (everyone is afraid to make a sound in front of her b/c she gets so angry). Other kids make the noises on purpose to get a rise out of her.

The worst part about it that she feels like the only one that has Misophonia. Does anyone have any knowledge/experience with this?

From what I have read online, it may be a form of synesthesia. My younger daughter has visual syn, but it doesn't affect her socially.

I have worked for years with students with a variety of issues. For reaction problems I work on validating feelings (anger, stress, anxiety - those are feelings) and then working on responses to those feelings. You can't tell someone how to feel, but you can help them find appropriate reactions to those feelings.

 

[seashoreCM]

OT: I would expect reasonable accommodation for a handicap to include an alternate opportunity to take a test in a customized surrounding. This way her grades won't slip so much (or at all).

One thing to explore is for the school to treat her as deaf for portions of the day. If she wears earmuffs then for all intents and purposes she will be deaf. (Disallowing earmuffs IMHO is unreasonable.) A device that pumps white noise to mask other sounds and that costs way less thatn $1500. is a pair of ordinary earphones (Beats or Ear Candy included) plugged into a non-digitally tuned FM radio with the dial set between stations. No earphones regardless of program material should be turned up loud.

I would be cautious of expecting the school to take drastic measures affecting most students e.g. things analogous to forbidding peanut butter (& jelly) sandwiches within the building.

Hard to get around her feeling (or being) the only one with the disorder among the 34 students in a particular classroom.

 

[cobright]

There are 34 students crammed in her small classroom so you can imagine the amount of yawns, coughs etc. She was allowed to wear ear plugs for testing but was not allowed to wear anything that covered her ears. The plugs didn't work, she heard all the trigger sounds because the testing environment is so quiet. There are devices that look like hearing aids that pump white noise into the ears but those are $1500 EACH.

You know those spongy earplugs? I have a tiny little motor, like they put in cell phones to make them vibrate only smaller, that I could fit into one of these spongy earplugs. Along with a tiny battery and a switch, it would seal out outside noise and also mask it with a very gentle soft low humm.

You wouldn't want to walk around with them because they would effectively block all outside sound. I have built them up for myself and people like me who are married to snorers, send me a msg if you are interested. A lot cheaper than $1500, like a couple bucks worth of parts.

For walking around, I wonder about something like shooters hearing protection. You can hear perfectly but in a microsecond of the gunshot report triggers a circuit to clamp down outside noise. It seems like that threshold is something we could adjust.