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جوري
05-16-2010, 01:08 AM
Eleven years ago, a distraught father drove his 16-year-old daughter down from Canada to my tinnitus and hyperacusis clinic in Oregon for help. The girl complained of an extreme reaction to everyday sounds, such as the eating or breathing noises of other people; she had dropped out of high school and refused to sit at the family dining table. She had suffered the sudden onset of these symptoms at age 13, and the number of "triggers" was increasing and creating a seriously limited lifestyle. Her reactions to annoying sounds were immediate and severe: emotional outbursts, rage, a sense of a strong need to flee the scene, and uncontrollable anger. This was upsetting to a previously happy family life--thus the drive down to Oregon.
All physical evaluations had revealed perfect health, including perfect hearing. There was no history of psychological or emotional pathology and, according to her home-schooling tutor, the girl was making straight As. She did not have any reduction in her loudness discomfort levels (LDLs) in the booth; as a matter of fact, the auditory system was working perfectly, as far as I could tell. There was no tinnitus or hyperacusis.
This was the first case of selective sound sensitivity syndrome (4S) that I had encountered. Sinc e that time, 11 long years ago, thousands of similar cases have presented to my clinic with relatively identical case histories and etiologies. In the vast majority of cases, the children or youth are often referred by their primary care physicians to an ear specialist and an audiologist for evaluation. Audiologists do need to be aware of the syndrome and its symptoms, which are characteristic and demonstrate a similar profile in most cases.
4S appears most of the time in children between the ages of 8 and 13. It generally has a sudden onset point and the subjects are able to describe the event with great detail and precision. Most often the first negative encounter with these softer sounds is with a primary family member--usually mom or dad, but sometimes it is a sibling that presents the problem first. These "trigger" people are important in the syndrome, as the child rapidly forms strong negative associations with the activities and events that create the potential for the "trigger" to emerge, e.g., preparing for dinner at home. Over time, these triggers tend to expand and include other people or other situations.
There appears to be a genetic influence in 4S due to the high number of subjects who report a relative with similar issues related to sound and negative associations. A typical reaction of the family to the subject is to insist that the reaction stop because "no one else is bothered by dad's chewing sounds, so just knock it off." Over time, the child realizes that this is a unique situation and that others do not or cannot share these reactions; a sense of shame develops about the problem. This constricts the flow of open conversation in most cases, and the child begins to adopt avoidance behaviors that circumvent exposure to the noxious sounds, e.g., not hungry at dinnertime, but later wants to eat.
Figure 1 shows the results of a recent survey conducted by my clinic with 100 self-selected participants from an Internet support group. To my knowledge, this survey provides the first data collection of any type for 4S.
To date, the vast majority of the subjects have been prescribed mood- or brain-chemistry-altering drugs. Out of 100 subjects in the survey, 99 had tried one or more medications for their 4S. It appears that these medications have little or no effect on auditory system problems with soft everyday sounds. Similar results have been found in the dozens of patients who have directly consulted my clinic for help over the past decade.
The 16-year-old patient from Canada provided a clue for a possible therapy, as she remarked the one place she enjoyed at school was the large noisy cafeteria. As a matter of fact, that was the only place in the school that was comfortable for her. Since "cafeteria chatter" is a standard background noise stimulus used by audiologists, I considered how that sound is actually a blend of noise, tones and pitches that creates a band of steady sound. It was a small leap to see that tinnitus retraining therapy (TRT) devices, with their broad band stimuli output, might be of use.
Using Jastreboff's neurophysiological model of tinnitus, I applied the use of bilateral sound generators to assist in significantly increasing the ambient sound levels of patients.1, 2 Using an open-ear model, the broad band signal generators stimulate much of the cochlea and appear to improve tolerance in a large number of subjects. The units engage the auditory system and lessen the amount of auditory contrast between a quiet background noise floor and the offending trigger sounds.
Children have been able to wear their nearly invisible devices into classrooms and at home and resume many of their former activities. While the use of these sound devices does not appear to result in long term recovery or diminishment of the symptoms of 4S, it eases the severity of the reactions and allows the wearer to enjoy more of daily life. Providing a trial period makes sense, as it allows for a test-run time to assess the real value of the units.
The formal identification and definition of 4S has yet to begin. An online support group currently has about 800 members who have formed several networks of international information and education sites and have issued with appeals to the National Institutes of Health (NIH) for help in studying the syndrome. 4S problems do not appear to dissipate with adulthood; rather, people with 4S tend to structure their entire lives around accommodating their noise sensitivity issues in work and social settings.
In the tinnitus and hyperacusis clinic, of course, the need for adjuvant therapies is very important, and a strong network of like-minded medical providers has slowly coalesced to include neuro-psychologists, neuro-psychiatrists, neurologists, and otologists. It is important to work within a framework of specialists in these cases to be sure that every angle is considered and recognized.
Recently I was giving a talk about tinnitus at a seminar for audiologists; there were a few moments for a free topic and I introduced the subject of 4S to the group. I had hardly spent 5 minutes describing the information I have gathered when a young audiologist to my right side raised her hand. "I have that!" she said. And, like the vast majority of the subjects I encounter every day, she was pleased and relieved to discover she has thousands of "cousins" with the same problems and concerns and that her problem even has a name!
References

  1. Jastreboff, PJ, Hazell, JWP. (1993). A neurophysiological approach to tinnitus: clinical implications. British Journal of Audiology, 27:7-17.
  2. Jastreboff, PJ, Gray, WC, Gold, SL. (1996). Neurophysiological approach to tinnitus patients. American Journal of Otology, 17:236-240.

Marsha Johnson, AuD, opened the Oregon Tinnitus & Hyperacusis Treatment Clinic in the summer of 1997 to devote herself full-time to the evaluation, diagnosis and treatment of these auditory disorders. For more information: www.hyperacusis.org, www.tinnitus-audiology.com, Oregon7@aol.com.
Figure 1: Survey of 100 Internet Support Group Participants with 4S Symptoms Gender Female 72.0% Male 28.0% Age of Onset Under 5 3.1% 5 to 9 29.9% 9 to 13 36.1% 13 to 20 20.6% 21+ 11.3% Primary Trigger Sounds Eating noises (smacking, chewing, gum-chewing) 92.0% Breathing noises (nose, sniffling sounds) 8.0% Medical Providers Consulted for Symptoms General doctor 52.4% Specialist ENT 23.8% Psychologist 60.3% Psychiatrist 34.9% Audiologist 28.6%

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PouringRain
05-16-2010, 01:28 AM
Interesting. I read a book once about a girl who had super sensitive hearing. I won't share the title, because it was not a good book and I threw it in the garbage after i read it. LOL


format_quote Originally Posted by τhε ṿαlε'ṡ lïlÿ
associations. A typical reaction of the family to the subject is to insist that the reaction stop because "no one else is bothered by dad's chewing sounds, so just knock it off."

I do not have this hearing sensitivity, but this line made me smile, because I can totally relate. ;D My brother makes AWFUL sounds when he eats, but apparently I am the only one bothered by them so I just keep my mouth shut and stay away from him as much as possible. And my mom.... I can identify her by her breathing even. A few weeks ago I walked into a public bathroom and I did not even know she was there till I heard her breathe and I called to her, "mom?" And she answered and asked me how I knew it was her, and I told her "I heard you breathing." ;D :nervous: But, no, I do not have this sensitivity thing.
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جوري
05-16-2010, 01:34 AM
that is an interesting happenstance...

I do get bothered by certain sounds but I don't react verbally to them.. it affects me physically and for a brief moment .. I really can't describe the feeling, I guess sort of like when someone is scratching their nails across the board.. it is almost a chilly knock me out of my senses or balance for a brief second.. it can be quite jarring.. especially when I have a migraine.. but with that I am also very sensitive to light as well..

peace
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PouringRain
05-16-2010, 02:26 AM
I think I am like you Vale's Lily, because I also have sound and light sensitivities. I also can be sensitive to certain textures or materials. Like you, I do not react verbally, and it seems as though the people who have that syndrome react verbally, even physically by altering behaviors, and it affects their life.

I have always wondered if mine is more associated with introversion. I read a theory once that talked about introverts have a low threshold for stimuli and extroverts having a high one, which is partly why an extrovert can enjoy loud parties and may be boisterous, etc. Whereas an introvert shies away from noise, crowds, etc. It was just a theory I once came across, and I have never looked at if there is any research associated with it or validity to it. I just know that for myself it appears to be true.

In the article above it talked about how people with that syndrome might avoid things like having dinner, even if they are hungry, and structure their entire lives around their sensitivities. For me, that is not the case at all. I may avoid being around my brother when he eats or drinks, but leaving a room is different from avoiding family meal times. When I told my mom I recognized her by her breathing, it was the first time I had told her that. LOL None of them know how much things like my brother's eating "noises" or my mom's breathing can bother me. I can't say that I have ever changed my work space to accomodate my sensitivities, and I am actually quite good at tuning things out. (I dunno why I can't tune out other things. Haha)
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جوري
05-16-2010, 02:40 AM
format_quote Originally Posted by PouringRain
I think I am like you Vale's Lily, because I also have sound and light sensitivities. I also can be sensitive to certain textures or materials. Like you, I do not react verbally, and it seems as though the people who have that syndrome react verbally, even physically by altering behaviors, and it affects their life.

I have always wondered if mine is more associated with introversion. I read a theory once that talked about introverts have a low threshold for stimuli and extroverts having a high one, which is partly why an extrovert can enjoy loud parties and may be boisterous, etc. Whereas an introvert shies away from noise, crowds, etc. It was just a theory I once came across, and I have never looked at if there is any research associated with it or validity to it. I just know that for myself it appears to be true.

In the article above it talked about how people with that syndrome might avoid things like having dinner, even if they are hungry, and structure their entire lives around their sensitivities. For me, that is not the case at all. I may avoid being around my brother when he eats or drinks, but leaving a room is different from avoiding family meal times. When I told my mom I recognized her by her breathing, it was the first time I had told her that. LOL None of them know how much things like my brother's eating "noises" or my mom's breathing can bother me. I can't say that I have ever changed my work space to accomodate my sensitivities, and I am actually quite good at tuning things out. (I dunno why I can't tune out other things. Haha)
from my understanding it is a genetic predisposition.. I can withstand loud noise, I just don't like it, but that is different than having a reaction to certain sounds, like a spoon being dropped all of a sudden, it almost shocks my nerves and it permeates my being with this chill.. but as stated it is only instantaneously and it resolves right away, as opposed to the sound and sensitivity that comes with migraines for instance which is ongoing and I need to be in a dark quiet room in fact I have purchased products to help with that, problem is when it is time to use them, I perceive them as added nuisance lol.. they are more helpful when I am well and need to relax and concentrate as opposed to when I am suffering.. my reaction tends to be sheltering of myself and I think that reacting outwardly and verbally would probably detract from that and wouldn't really change things for no one really intends to drop a spoon for instance.. so how can one predict?

I am generally an introvert but it just became my nature for pursuit of my studies.. I don't at all like parties or malls or being in open large spaces around people it makes me feel a but claustrophobed .. so I either shop by mail or design my own clothes and send pictures to my tailor .. she has made me garments that folks often stop me on the streets and ask me where I have purchased them from :D but I digress (it just feels good that you can be out of touch with the world and still possess good sense)

Let me give you the distillate of my experience in dealing with migraines if you want..

I purchase bucky forty blinks




I have alot of sleep masks but this I find to be the most comfortable.. it is still not 100% but far better than the rest.. my problem with this mask though minimal comparatively is the band tends to bother my ears a bit..
also another from bucky with ear plugs



this is more expensive and in my humble opinion isn't as great as the first one but it does come with ear plugs and is a step above the rest..

peace
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PouringRain
05-16-2010, 02:56 AM
I wonder if I could sleep with a mask and ear plugs or if they would bother me too much. At present I just cover all lights, but I awaken to every sound.

I did notice that the article talked about a genetic predisposition. I believe that personality is also innate, but can be influenced by nurture/environment. Have there been any studies on the above syndrome and it's correlation with introversion/extroversion that you know of?

That is nice you have a tailor. :p I have to make my own stuff.... and I don't get stopped on the street and asked about mine. LOL
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جوري
05-16-2010, 03:17 AM
format_quote Originally Posted by PouringRain
I wonder if I could sleep with a mask and ear plugs or if they would bother me too much. At present I just cover all lights, but I awaken to every sound.

I did notice that the article talked about a genetic predisposition. I believe that personality is also innate, but can be influenced by nurture/environment. Have there been any studies on the above syndrome and it's correlation with introversion/extroversion that you know of?

That is nice you have a tailor. :p I have to make my own stuff.... and I don't get stopped on the street and asked about mine. LOL
We have studied matters on hyperacusis only.. but not selective sound sensitivity .. it isn't very popular.. there isn't alot of literature on it because it tends to be a relatively minor nuisance for most.. and many others simply outgrow it..

BTW I never sleep with the mask on, unless I am away from home.. and if I am on call or whatever then I don't sleep because if I do then I don't feel very well, like my body and my mind can't catch up with each other.. this is for the early morning when the sun comes in it almost always wakes me so that is when I wear it.. and it does and excellent job because then I only wear it for a couple of hours like from 7-9 on weekends .. or if I am traveling by plane..

I found my tailor on ebay.. I really liked this outfit but it was mini so I asked the lady if she can make it for me with my specific length and she agreed, she has been making my clothes ever since and I am grateful since I am tall I used to purchase my skirts from this shop in England called 'tall and all' lol... but they only have a few skirts that are representable the rest is so tacky .. thank God this way I have control over the material, choice color and style..












How did we end up on skirts from sound sensitivity? :haha:


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PouringRain
05-16-2010, 05:19 AM
I love those skirts! I wear a lot of ankle length skirts also, but I usually wear fuller ones.... like this style:




I am the opposite of you, in that, I am not tall. I am super short.
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جوري
05-16-2010, 05:43 AM
long skirts make anyone taller especially if straight cut.. problem with pencil style as opposed to A cut is that you almost always have to have a split for movement but that is where my tailor comes in with a one kickbox pleat.. I am not sure if folks who were minis are actually comfortable wearing them or do so because it is perceived as more presentable? In my humble opinion they'd be better off in slacks but to each his own I think..

I have a zillion cardigan too but that is a topic for another thread..:smile:

peace
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