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Video: Mysterious disorder triggers outrage over sounds

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    >>> have certain things that drive us up a wall, 2000 some, the sleetest noise can cause major anxiety and a lifetime of isolation. they suffer from a mysterious condition that was profiled in this week's "new york times."

    >> reporter: listen to this. a leaky faucet. ticking clock. hungry dog. every day sounds that most people can i go authorize. but for people who suffer from misophonia, subtle sounds trigger intense rage and nerve-racking anxiety that is hard to dial down.

    >> the fear is that i won't control the rage. it's huge, it's physical, it's everything i have turns this to a boiling pot of rage. and i have to talk myself down because this isn't the way you're supposed to live.

    >> reporter: for ada , it all started at the dinner table when she was a girl. the sound of her family eating would trigger very adult anger.

    >> when i was nine, i remember i wanted so desperately to be close with my mother. but i couldn't stand to be near her physically. because of the sounds that she made.

    >> reporter: no matter how loud ada 's hatred for certain noises expanded. few in the medical community recognize the condition outright and doctors thought she had post-traumatic stress disorder. she spent years in therapy.

    >> what they experience is a mount saint helen eruption of emotions and feelings associated with these sounds.

    >> reporter: dr. johnson is an audiologist will portland. she runs and online support forum for i'm who think they have misophonia. nearly 2,000 have joined. many of them self diagnosed.

    >> when they go around the communities looking for help, they're turned down left and right by the medical providers. they've never seen anything case like this, they don't know what to make of it.

    >> reporter: ada found her best treatment is on which avoidance, eating continuener a separate room from her husband, or making her own noise and screaming to release tension. as more people hear about this little studied condition, ada hopes her story will let others with similar experiences know that they are not crazy.

    >> it's almost like the underground is coming out. the community is growing. the truth is i didn't choose this. i can't think my way out of it. and we need help. and it's happening.

    >> heidi says she suffers from misophonia and dr. raj is a "today" contributor. good morning to both of you. your condition you say is when you hear someone chewing, it just causes what in you?

    >> it's ban panic, it's rage. you really just want the person to stop. and it's not just chewing, it's loud mouth , open mouth, chewing, chomping, slurping. gum chewing is really difficult. snap, crackle, pop, popcorn, going to a movie theater . but what happens is you just want to stop and you really get an instantaneous fight or flight . so either you want to knock the person's teeth out so they can't chew anymore, which is pretty intense, or run. run as fast as you can.

    >> i don't know which has been worse for you, the pain of this, the struggle with this, or the idea that people thought you were crazy. so how relieved are people when they finally realize that there is a family for this, it's a condition, you're not alone?

    >> it's just a weight is lifted off you you. because i've had this since i was about eight or ten. most people get it when they're between 8 and 13. and we've lived our lives completely isolated believing we're the only person with this issue and not knowing that other people have had it. thank goodness for the enter threat. but just the feeling that, my god, i'm crazy, why complaint i be like everybody else, why can't i brush it off. it's really trouble zchl.

    >> how can people know that they are 00 not just being annoyed by sounds, but actually have this condition? and what can they do about it?

    >> we have toic matt distinction. as understand, just getting slightly distracted or annoyed by a noise which can happen to many of us is different. what heidi is feeling is a really visceral, really strong physical revulsion from a noise where she wants to run away , she might feel rage or anger. and we don't know exactly what's causing it, but there's probably something going on in the way the brain is processing the sound that's affecting the emotional system in our brain. what with k. they can they do, unfortuna tely, we don't have a lot of treatments. we're learning who are about every day, but someone needs to study the patients and find out what's going on.

    >> and there have been generations of women who have had this.

    >> there probably is a genetic component to it. the first step is knowing there are other people that have this, there are support groups on line. heidi has talked about coping strategies that she's employed. it's really about learnin how to live with the disease.

    >> i think this is just the beginning on reporting on this. thank you so much for your information.

TODAY
For Adah Siganoff, and other sufferers of "misophonia," everyday sounds can cause extreme reactions.
By
TODAY contributor
updated 9/8/2011 10:57:36 AM ET 2011-09-08T14:57:36

Ever since she was a little girl, mealtime has been a torture for Adah Siganoff. The eating sounds – the chewing, the slurping, the chomping – drove Adah to distraction. The noises grated on her nervous system, sparking anxiety and rage. To this day, she can’t sit next to her husband at dinner time – she has to go to the peace and quiet of another room to eat.

“The fear is that I won’t control the rage,” Siganoff told TODAY’s Mara Schiavocampo.  “It’s huge. It’s physical. It’s everything I have turns into a boiling pot of rage.  And then I have to talk myself down because this isn’t the way you’re supposed to live.” 

Whether it’s finger nails scraped across a blackboard or the sound of someone slurping up soup, there are noises that annoy all of us, sounds that just seem to get under our skins. But that reaction pales in comparison to what people like Adah feel.  For them, the reaction is instantaneous and intense. It feels like their whole bodies are exploding in reaction to this horrible sound.

Adah and others like her suffer from a little-known condition that has recently been dubbed misophonia by the few experts who have begun to look into it.

“It’s all about the reaction,” Siganoff explained. “The rage. The anger. Not being able to stop it. For people with this disorder, the sound is like 200 people pulling their fingernails down a chalkboard at the same time. It’s that same intensity and it’s very overwhelming.”

An article in The New York Times earlier this week may have been the first time most Americans heard of the strange and mysterious condition. The new attention has been a relief to people like Adah and Heidi Salerno, who says she has felt isolated for years by her inexplicable symptoms.

“It’s just like a weight has lifted off you,” she told TODAY’s Ann Curry. “Because I have had this since I was about 8 or 10. We older patients have lived our lives completely isolated, believing that we were the only person with this issue and not knowing that other people have had it. Thank goodness for the internet.”

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Until she discovered others on the internet with the condition, Heidi thought she might be suffering from some sort of mental illness.

“There’s just the feeling that, 'my God, I’m crazy,'” Salerno told Curry. “Why can’t I be like everybody else? Why can’t I brush it off? Why can’t I ignore it? It’s really troublesome.”

The internet was where Siganoff, too, found answers.  It’s also where she discovered there were support groups for people suffering from misophonia.

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She’d spent many years in therapy trying to deal with what had been mistakenly diagnosed as post-traumatic stress syndrome, or PTSD. With no signs of improvement, she was desperate.

So one day Siganoff Googled the phrase:  “I hate eating sounds.” A few keystrokes later she’d hooked up with a support group run by Oregon audiologist Dr. Marsha Johnson. Johnson describes the intensity of what people with misophonia feel this way: “What they experience is a sort of Mount St. Helens eruption of emotions and feelings associated with these sounds.”

Johnson started her group in an effort to reach out to people who felt totally alone.

“They’re fairly isolated from one another and when they go around the community looking for help they’re often just turned down left and right by the medical providers,” she said. “The medical providers have never seen another case like this. And they don’t know what to make of it.”

Right now no one knows exactly what causes the intense reactions to the common sounds that most of us are able to block out.

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Dr. Roshini Raj suspects it’s faulty brain wiring. “There’s probably something going on in the way the brain is processing the sound that is affecting their limbic – or emotional – systems,” she told TODAY.

“Unfortunately right now we don’t have a lot of treatments. And honestly, many doctors don’t recognize it as a condition. We’re learning more about it every day. But someone needs to study these patients to find why it’s going on and what we can do about it.”

Until that happens, people like Adah and Heidi will continue to depend on their own coping mechanisms, like eating alone or screaming to release tension. Ultimately, though, it means a lot to them to see that the medical community might finally be taking their problem seriously.

“The truth is I didn’t choose this,” Adah said. “I can’t think my way out of it. We need help. And it’s happening.”

Linda Carroll is a health and science writer living in New Jersey. Her work has appeared in The New York Times, Newsday, Health magazine and SmartMoney. She is the co-author of the forthcoming book "The Concussion Crisis: Anatomy of a Silent Epidemic."

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