Hypersensitive Hearing | Hyperacusis | Recruitment
Tinnitus | Vertigo
Coping | US Statistics | Hearing Tests | Daily Dilemmas
To individuals and Families experiencing the trauma of Hyperacusis, Recruitment, and Hyperacute Hearing:
Many parents and adults have asked - What is it like to have extremely sensitive hearing? Those with hyperacusis, recruitment, or hyperacute hearing try to explain what it is like but find themselves misunderstood, isolated, and lonely.
As editor of the network I will make an attempt to speak for all those who have 'delicate' ears. Although we all have different sensitivities (tolerances), many of the things discussed here will help individuals with hypersensitive hearing or those who try to care for them. The hopeful goal is to help you better understand our extraordinary condition.
When the words 'us' or 'we' are used, I am referring to all those in the world who communicate with this network of individuals who have a collapsed tolerance to sound. This unique international community consists of individuals with hyperacusis, recruitment, hypersensitive hearing, misophonia, phonophobia, Meniere's disease, and even autistic children. Our network also consists of hearing professionals worldwide who are either experts in the field of hyperacusis or yearn to learn more about it. Another large part of our community consists of families who want to learn more about this rare auditory phenomena so they can better take care of a member of their family who has hyperacusis. We applaud that kind of compassion because in many ways this is a hidden (not seen by the naked eye) disability. The only way an individual can remotely understand what a hyperacusis is going through is if they experience the trauma of severe migraine headaches. Many individuals who suffer through migraine headaches also experience, during their migraine, a hypersensitivity to sound and light. During these episodes (migraines) they yearn to be in a dark room that is completely void of sound. Even though this is not an episode of hyperacusis, it is as close to a similar experience as one can get to it.
Before we go any further, it is important for you to understand three basic categories of sound sensitivity.
To the best of our knowledge, these individuals are usually born sound sensitive and do not have tinnitus. This group shares two similarities to people with hyperacusis: they usually have little to no hearing loss; and share the ability, like some hyperacusis patients, to produce an audiogram showing hearing sensitivity at negative decibel levels.
A segment of individuals with hypersensitive hearing are autistic (many of which are non-communicative). Because they are non-communicative, parents of autistic children can learn much from people with hyperacusis to help them better understand what their children are experiencing. We can tell them why their children put their hands over their ears. Not only do these children have difficulty being diagnosed autistic, but many do not get the kind of therapy that might help them resolve some of their sound sensitivity. Auditory Integration Therapy (AIT) may dramatically improve the sound sensitivity these children and young adults experience. To learn more about AIT you can visit this website: http://globalautismcollaboration.com/
Often children and adults with hypersensitive hearing have specific problem frequencies that make certain sounds intolerable. AIT involves ten days (2 sessions a day/30 minutes a session) of sound therapy which involves listening to specially filtered music through headphones. The frequencies the patient is sensitive to are filtered out of the music. For some unknown reason after the patient completes AIT, the problem frequencies are easier to tolerate. For autistic children, once their sound tolerances improve, their behavior also improves. Children who have dramatic sound sensitivity should be tested for autism.
Although this special AIT therapy is not a cure for hyperacute hearing, hard data shows impressive results. Unfortunately the founder of AIT (Dr. Guy Berard from France) believes his therapy will work for people with hyperacusis. He is wrong - it makes us worse!!
Children with autism have hyperacute hearing, not hyperacusis! Autistic children are born with hyperacute hearing. Individuals with hyperacusis usually incur a collapsed tolerance of sound through noise injury, head injury or the unfortunate side effects of drugs.
Tinnitus and hyperacusis are almost always made worse by AIT because the therapy involves playing music at levels between 65-95 decibels (too loud for the hyperacusis patient). Almost all people with hyperacusis have tinnitus or eventually develop it.
Some individuals are not autistic but have hyperacute hearing. This is rare. Like autistic children, they have little to no hearing loss and no tinnitus. In some cases these individuals are very articulate with high I.Q.'s. They almost exhibit similar characteristics to savants (a phenomena generally attributed to gifted autistic children). To learn more about savants visit this website: http://www.autism.org/savant.html Could it be that individuals who are sound sensitive, articulate and very bright are borderline autistic? Yes, it is called Aspergers Syndrome, which is on the Autism Spectrum.
These individuals represent a small group of sound sensitive individuals in the world. They are not born sound sensitive, but develop a collapsed tolerance to sound primarily from noise trauma (sudden or cumulative). Other common causes include head injury, the unfortunate side effects of drugs, Lyme disease, air bag deployment, Bell's Palsy, and Temporomandibular Joint Syndrome (TMJ). How common is hyperacusis? It has been frequently reported that 50 million people in the United States have tinnitus (ringing in the ears). It has also been widely reported that 40% of these individuals claim to have hyperacusis. That would mean that 16 million individuals in the United States claim to have some degree of hyperacusis. Although hyperacusis is not rare, severe hyperacusis is rare. People with severe hyperacusis have great difficulty living in the mainstream of life because their sound tolerances are so collapsed. In other words, hyperacusis is a condition where individuals have a significant collapsed tolerance to sound.
For example, some people with hyperacusis have such a severe collapsed tolerance to sound, that it may be difficult and sometimes impossible for them to endure all the environmental noise which comes with living in our world today. All sounds may be perceived as too loud, although the high frequencies are particularly troublesome.
There is little to no detectable hearing loss with hyperacusis and all tests will confirm our ears to be perfectly normal. For that reason many doctors are dumbfounded and give the patients hearing a clean bill of health. Some people with severe hyperacusis can produce audiograms that show they can hear at minus decibel levels. Because of this, hyperacusis patients may feel that in addition to having a collapsed tolerance to sound, they can suddenly hear better than those with normal ears.
So far, the most promising therapy for hyperacusis involves listening to broadband pink sound at barely audible levels for a disciplined period of time each day. This protocol is called Tinnitus (or Hyperacusis) Retraining Therapy and was developed by Dr. Pawel Jastreboff who is currently at Emory University in Atlanta, Georgia. To ease the demand for this treatment, Dr. Jastreboff has been certifying hearing professionals throughout the world to help administer this treatment. This is a compassionate gesture because people with hyperacusis have a terribly difficult time traveling due to the sounds of car or air travel. To find a list of hearing professionals who are certified to administer TRT throughout the world visit this website: http://www.chat-hyperacusis.net/post/TRT-Worldwide-List-of-Clinicians-(Retraining-Therapy)-3334680
Broadband pink sound (TRT) is similar to the static you hear on a radio frequency that contains no radio station (detuned FM station). This FM white noise contains all the frequencies the human ear can hear - including the ones we are sensitive to. Pink noise has been found to be a better sound because there is less energy in the high frequencies. By lessening the impact of the high frequencies, our ears can recover faster. Pink sound spans the most common frequencies heard in every day life. For that reason, once our ears learn to tolerate pink sound, many are able to return to the mainstream of life.
Pink sound is accomplished by using two delivery systems. One is a masking device (similar in appearance to a hearing aid) called a sound generator. The other method of delivering this sound to the ear is by listening to a broadband pink CD. Although this therapy is not a cure, it can help significantly in reestablishing tolerances to sound. A broadband pink sound CD is available through the network at a nominal cost. More information on this therapy will be discussed later in this supplement.
This, I believe, is the largest group of sound sensitive people in the world. In lay terms, recruitment is sound sensitivity with pronounced hearing loss. Usually this group consists of individuals over 40 years of age that have the classic high frequency hearing loss evident on their nose diving audiogram (hearing exam).
People with recruitment cannot hear some sounds at all (i.e. birds chirping). Once the noise and/or a specific frequency or sound reach a certain intensity, they not only hear it for the first time but are overwhelmed by its loudness. They have an abnormal growth in the perception of loudness. For example, if a fire truck was coming down the street toward a person with recruitment, they may barely hear the siren when its tone is at the highest notes (frequency) of the siren. However - as the siren gets closer they are suddenly overwhelmed by the fire truck siren and cover their ears. Sometimes people with recruitment will say "Speak up a bit, I can't hear what you are saying" followed by "Don't shout! I'm not deaf."
It mostly affects high frequency sounds and is usually caused by the loss of tiny hair cells in the part of the inner ear called the cochlea. The ability to grade different intensities of sound is impaired because of the reduction in the total number of hair cells and nerve endings available to pick up sound. People with this kind of damage have a raised threshold of hearing.
Below this threshold nothing can be heard, but any sound above the threshold produces a sensation of near maximum loudness. As the intensity of sound increases above the threshold of hearing it very rapidly 'switches on' (or 'recruits') all of the remaining undamaged nerve fibers.
A normal ear is able to not only hear extremely quiet sounds (between 0-20 decibels hearing level), but can also tolerate very loud sounds without discomfort (up to levels of 110 decibels hearing level). An ear with recruitment might well be unable to hear low decibel sounds below 40 decibels, but find any sounds above 90 decibels not only uncomfortable but liable to produce distortion. This leaves a narrow band of sound that can be heard well.
Where there is hearing impairment in an ear with recruitment, even quite moderate intensities of sound in the environment may seem unbearable loud. Because people with recruitment have varying degrees of hearing loss, care givers often want to fit them with hearing aids to improve their ability to hear. They must realize however that this may complicate their problems by narrowing the comfort zone they have for not hearing certain sounds yet hearing other sounds too well.
New digital hearing aids are being developed which employ compression and a volume control. These devices hold promise as technology improves however each person with recruitment is different and a good hearing aid would have to be customized to the patients recruited ears. In fact, the two ears on an individual with recruitment may have different levels of hearing loss, thus a pair of hearing aids may have to be tuned differently for each ear.
Hearing aids have improved a great deal, but have a long way to go to come close to the experience of normal hearing. There is still a large gap between the wonder of sound experienced through the normal ear and that which is simulated through the electronic experience of a hearing aid.
Truly the normal, healthy ear is, as the H.E.A.R. (Hearing Education and Awareness for Rockers) says - the 'finest musical instrument.' Like all people who are sound sensitive, individuals with recruitment walk a fine line between being comfortable with sound and completely intolerant of certain surroundings. Many people in the world have recruitment, especially the elderly.
With the significant hearing loss that comes with old age, you would think most elderly could tolerate the music that comes from a common event that grandparents must attend - weddings. On the contrary, many can't wait to leave the intolerable noise and often end pleading with the band to 'turn it down'.
Tinnitus, Vertigo, TMJ
Most who develop hyperacusis in one ear and have it cross over to the other ear. For some it never crosses over. Some of us do not develop tinnitus for many months after our initial onset of hyperacusis. For some, tinnitus starts in one ear and remains there, and for others it can cross over just like hyperacusis. It is rare, but there are people in the network that have hyperacusis but no tinnitus.
Tinnitus is a very common problem. As I said before, there are approximately 40 - 50 million people in the world who have tinnitus. It is a common thread that is the byproduct of many auditory problems. Some people in the network also have vertigo. To learn more about tinnitus, visit the website of the American Tinnitus Association: http://www.ata.org/
Vertigo is dizziness and is sometimes referred to as a balance disorder. Many in the network experience ear discomfort or pain. For some the pain or discomfort is constant, for most it is intermittent, and some experience no ear pain at all. Some describe their ears as having a feeling of pressure or fullness. Others describe it as a sharp pain or a hot burning feeling inside their ear.
Some people in the medical community believe that a common 'ear ache' is the only time the ear can experience pain. Some E.N.T.'s maintain that the ear is incapable of experiencing pain because there are no nerve endings in the inner ear. This is false.
Some people in the network also have TMJ, which is Temporal Mandibular Joint Syndrome. These people experience discomfort in the movement of the lower jaw. Some theorize that TMJ can cause hyperacusis.
The bottom line is that we are all truly unique. Although we have many differences, we also have many similarities. All three categories of sound sensitivity are grossly misunderstood. Few medical people in the entire world know about these three groups of sound sensitive individuals. It is no wonder why people who suffer with these dilemmas have a terrible time receiving proper treatment or worse yet - trying to obtain disability.
No two of us have the same degree of difficulty with sound - God made us all unique. Now that I have discussed the differences among sound sensitive individuals, I will spend the rest of this supplement discussing our similarities and main problem areas.
Many with hyperacusis or recruitment suffer from varying degrees of tinnitus (ringing in the ears or head noises). All these conditions can be disabling depending on their severity. For many of us our problem is three-fold:
1. Our collapsed tolerance to sound means we have a difficult time listening to sounds which exceed 60 decibels (the sound of someone talking).
2. Our dynamic range is so narrowed we cannot handle quick shifts in noise intensity.
3. Tinnitus (ringing in the ears or head noise) disrupts even our quiet time and ability to sleep.
Many of us have gotten better over time and some see little to no improvement. Ears heal so slowly, yet time is a great healer. Much improvement depends on the kind of advice we receive when we first come down with a collapsed tolerance to sound. So few doctors know anything about our condition, we rarely get good advice and frequently hearing tests are administered to us which can make our condition even worse ( MRI or Brainstem Evoke test). Before any hearing tests are performed on a patient who is suspected to have hyperacusis, their Loudness Discomfort Levels (LDL's) should be known. If the sounds generated from the test exceed the LDL of the hyperacusis patient, their sound tolerance can become further collapsed (worsened). This would be unfortunate.
No one knows the answer to solving our problems but some clues are beginning to surface. Currently a popular theory is that there has been a breakdown or dysfunction in the efferent portion of the auditory nerve: efferent meaning fibers that originate in the brain which serve to regulate or inhibit incoming sounds. Some believe it involves the facial nerve.
If the cause would be damage to the auditory nerve then why does hyperacusis most often show up in patients who have no hearing loss? One possibility is that efferent fibers of the auditory nerve are selectively damaged even though the hair cells that allow us to hear pure tones in an audiometry evaluation remain intact.
Others believe the central processing unit which processes sound has been altered. Others believe it is a combination of both. These are only theories that have not been proven.
If hyperacusis comes on suddenly, many of us go through a significant crisis period experienced by severe depression. We feel tremendous isolation and can't imagine going through life in this condition. It feels like we were suddenly placed on the wrong planet where the volume control knob is stuck on high.
We must remember during this time just how much our family needs us. Those who love us will do everything possible to help us through this - but they need to learn about hyperacusis first. Like you, they need to be educated. Once they learn - then they can care for you. We must also understand that now there is a retraining therapy for our ears which has been very successful.
We must continually remind ourselves that we should not be angry with people who do not understand what has happened to us. After all, if it is even hard for us to understand what has happened, how can they make sense out of it?
Never think for one minute that you are all alone out there. This supplement will help you and your families understand that there are thousands of people throughout the world living fulfilling prductive lives even though they have a collapsed tolerance to sound.
Ears will almost always recover to some degree. It is very important during the initial onset that your ears should not be exposed to any extremely loud sounds. It is no different than another part of your body being injured. You must stay off the injury and allow it time to heal.
Frequently ear doctors tell us to completely abstain from wearing earplugs and get used to the noise immediately following the noise trauma. This is terrible advice! Sometimes we even have the misconception that if loud noise caused the problem then more loud noise will snap our ears back to normal. This is one of the worst mistakes to make following a noise injury.
After a sudden onset of hyperacusis or tinnitus, often many tears are shed as the sufferer tries to come to grips with the impact this may have on their lives and the lives of those around them. It seems like, along with our ears, our world has collapsed around us, along with all our hopes and dreams for the future. Time helps us realize our ability to adapt and the tremendous potential we still possess. We can still reach for the stars. Our ears have an amazing ability to bounce back.
As I have said, ears are the finest musical instrument we have, but we must take care of them, particularly in the world we live in where noise and fun go hand and hand. When we are born we can hear in a range from 0 - 20,000 Hertz or more. By the time we reach 40 years of age in America our hearing has been cut down to 0 - 12,000 Hertz.
Many elderly in America can barely hear in a range up to 8,000 Hertz. Elderly natives (over 80 years old) in Australia who are aborigines and have not been exposed to any loud noises other than those generated by nature (wind, thunder) have hearing similar to a young man in America.
We are killing our ears. This must stop. Until recently, factories always made sure that their employees wore eye protection, but never offered hearing protection. With the efforts of many organizations, including The Hyperacusis Network, many changes are taking place.
Professional musicians are wearing specialized hearing aids to protect their ears. Some young people are wearing foam earplugs to rock concerts. People are wearing ear protection when they cut their grass or use a chain saw. Manufacturers are starting to realize that they can market quiet dishwashers, automobiles, and tools. They are seeing that people will actually pay more to buy a quiet car or appliance because they feel less stressed after using it.
This is very promising but we have a long way to go. For some of us, at the time of onset, it is hard to even tolerate the sound of our own voice, let alone the voices of the ones we love.
Although hyperacusis is defined as a collapsed tolerance to normal environmental sounds, those of us who are the victims would describe it as having extremely sensitive hearing. Others describe it as having lost the acoustics in their ears.
Everyone, including the medical community, struggle with the definition of hyperacusis. The best way to describe hyperacusis in technical terms is to have you look at a graphic equalizer from an individual component stereo system. The graphic equalizer breaks down frequencies into Hertz bands usually from 250 Hertz (low frequency sounds) to 16000 Hertz (high frequency sounds). Some, or many of those frequencies, we may be extremely sensitive to depending on our condition (hyperacusis, recruitment, hyperacute hearing).
As I mentioned before, many of us have had our ears tested by professionals in ways which have caused even further damage since the tests involve listening to 90+ decibel sounds.
Before we receive any hearing tests, our tolerance levels must be known, so we are not hurt further. This is something your E.N.T. (Ear, Nose and Throat doctor) needs to know. If you mention this to him/her and they have no idea what you are talking about - you are in the wrong hands! Because most of the medical community does not understand our problem, we have to be very careful. For example, having an MRI can be devastating to our ears unless full foam ear protection is used and inserted correctly.
If an MRI must be performed, it is imperative that you wear full foam earplugs, and if possible, wear plastic earmuffs on top of the earplugs. If you have suddenly developed hyperacusis and it has not resolved itself in two weeks you need help right away. If your doctor and/or specialist tells you this will go away or that nature has a way of taking care of these things, you need to see someone else. If a doctor tells you that nothing can be done and that you will just have to learn to live with it - once again, you are in the wrong hands.
Any parent or spouse who has a loved one with hyperacusis, recruitment, hyperacute hearing, and/or tinnitus has likely been through much frustration trying to secure accurate information and reliable advice. Many E.N.T.'s (Ear, Nose and throat specialists) say that ear protection should only be worn by us in areas which are only too loud for the normal ear. After all, if a level of noise would not hurt the normal ear - it won't hurt our ears. WRONG! Our ears have been damaged by sound that does not hurt the normal ear.
Most people who come down with hyperacusis from noise trauma were in the company of other individuals who survived the event with little or no side effects. Remember that - your ears were different! We all have some extraordinary parts to our bodies and we all have some weak areas. Usually we find out the weak areas because some of them some day cause our death. No doubt, you have some extraordinary parts to your body too, but your ears ended up in the weak column.
The sooner you come to terms with this, the better you will actively seek treatment and learn to live your life fully, but with some modifications.
Contact The Hyperacusis Network at 1-920-866-3377 or the American Tinnitus Association in Portland, Oregon at 1-503-248-9985 for immediate help.
Now let us discuss what life is like for people with a collapsed tolerance to sound, and discuss ways that you can help yourself or your loved one who has experienced this trauma. We will show you ways to improve, and discuss products finally available which will make you feel more at ease in your day - to - day life.
The outer ear acts like a satellite dish that collects sounds. For us, the outer ear can be extremely sensitive to touch. Frequently, signs of affection involve hugging or rubbing hands through our hair can be loud on our ears. As unreal as this may seem to those who are caring for us, any contact with the outer ear can be upsetting. If you hug us, we love it, but be careful of our ears. If you run your hands through our hair or comb it - try not to make contact with the outer ear. The only "No Trespass" sign on our whole body is our outer ear. That leaves a lot of room for loving everything else (Smile).
Sleeping can be very difficult. Many times the mere act of turning our head on the pillow makes a loud noise in our ear. If we have severe hyperacusis we learn to roll our head on the pillow, or better yet, lift our head and reposition it. New cotton pillowcases can be difficult because the material is new and rough.
Most of us experience tinnitus (ringing in the ears) and are in a Catch 22 situation trying to sleep. Although we yearn for quiet time, once it is perfectly quiet we can hear the sound of our ears ringing. It would be like trying to sleep while listening to the test pattern on a TV. It is not uncommon for people with tinnitus to fall asleep to the sound of the radio, TV, or sound machine that simulates surf, waves, or rain. This will distract or mask the sound of the ringing of the ears. It can also be comforting to listen to the sound of rain outside when we are trying to fall asleep. It is the sound of thunder that sometimes requires some of us to wear earplugs during a middle of the night storm. One should never wear earplugs every night however for reasons we will discuss later.
For many of us our ears are most sensitive in the early morning and late evening. For this reason try to make these times as quiet as possible. If the night is hot and you have a fan on in the room - use a quiet fan. How do you find a quiet fan? Purchase a Sound Level Meter from Radio Shack (costs about $30.00). With this instrument you can turn on the meter while shopping for fans and find the quietest one for yourself. At the end of the day our ears are wore out. Some individuals explain that when they have taken in too much sound during the day they either get a 'sound headache' or worse yet - a migraine. Migraines make even people with normal hearing more sound sensitive. Imagine what it is like for a patient with hyperacusis to come down with a migraine. When this happens it is best to seek quiet space.
Fan noise is particularly bothersome to many of us. Ceiling fans can be almost whisper quiet if you find the right one. Hunter (brand) ceiling fans are an excellent buy. Some of us have a difficult time getting to sleep if traffic (planes, trains, and automobiles) are nearby. Some even have difficulty with crickets at night, rustling leaves, and birds singing in the early morning.
Cutting grass is a particular challenge. Push mowers are quieter than tractor type lawn mowers, but electric lawn mowers are best. Ryobi and Black and Decker now have models out which have rechargeable batteries. Just charge them up overnight and they are all set to go. The very best solution is to have someone else cut the grass. Others use foam earplugs or wear earmuffs.
Shoveling snow is also a problem because the metal shovel scraping the hard pavement can be too loud for some of us. Plastic shovels are quieter. Chain saws just annihilate our ears and should not be used under any circumstances.
For many of us, we miss working with wood and using a hammer. Pounding a nail is 100 decibels, and beyond what many of our tolerances allow! Let us talk about dynamic range. Although we have collapsed tolerance to sound, our ears cannot adjust to sudden shifts in volume. Even shifts from zero decibels to 40 decibels are hard for us, yet we may be able to tolerate sustained sounds of 40+ decibels.
What kind of sense does that make? Sustained sound is much easier for us to handle than sudden shifts in volume. That is part of the reason the early morning is difficult for us. Our ears have heard no sound all night and then as day breaks we must become reacquainted with noise. As we get on with our day - things often improve.
Allow me to share ways that can help one deal with the problems we experience with dynamic range. There is a secret to attending small public gatherings that helps ears slowly adjust to increases in sound. If you are going to an event where a gathering of people will be present, it is better to get there early. By doing this, the sound level will slowly increase as people arrive. Although many of us cannot attend public events, for those of us who do, it is a good idea to always get there early.
Also, check out where the speakers are in a room. Rooms with front speakers are much better for us than rooms with surround sound. We need distance from speakers to help our ears handle most public address systems.
Bathrooms are often a problem too. Never flush a toilet with the lid up. If possible, never flush while we are in the room. We often flush with our knee (or foot) while holding our fingers in our ears. Sounds odd, but in life you do what you have to do - right! The new low boy toilets are much quieter than conventional toilets.
The sound of running water through plumbing often emits a high sound that is distressing. We cannot stand the sound of running bath water or dishwater. Many of us wear foam or silicon earplugs when we take a shower. The quietest way to get clean is to have someone else draw your bath water. Spray shower heads work better. Water Pik makes a shower head that has five spray adjustments. Adjustable shower heads do more than adjust the spray; they adjust the sound frequency also.
Consider putting spray attachments to existing water faucets. These can be purchased at most hardware stores.
For new home construction it is better to have cast iron drainpipes run through insulated walls. Plastic drainpipes make unnecessary noise especially in a two-story home.
The kitchen is the other danger zone in the house. The sound of silverware hitting dishes or hitting the floor is distressing to almost all of us. It helps to use place mats, Chinet paper plates, and plastic eating utensils. Although this is the ideal, practically speaking we know we can't just throw out our dinnerware! Just watch us - we give new meaning to the phrase "eating quietly."
Kitchens also have running water, dishwashers, and the dreaded garbage disposal. Please warn us when you are going to use the garbage disposal so we can plug our ears, or better yet - leave that end of the house when these appliances are being operated.
More and more companies are starting to come out with noise friendly appliances. Actually noise has become a marketing tool. Unfortunately, the more quiet they make an appliance, the more the appliance costs. Overall though, great strides have been made in soundproofing kitchen major appliances.
This may come as a surprise to you, but some of us are even bothered by the sound of the fan running underneath the refrigerator. Many companies are still working on quiet refrigerators. The quietest refrigerator is a propane refrigerator available through RV (recreation vehicle) dealers. Unfortunately, these refrigerators usually are smaller (10 cubic feet). Some people in the network actually put their refrigerator in their garage. Some buy refrigerators, which are not frost - free. This cuts down on the fan running under the refrigerator. Always check Consumers Reports magazine when buying appliances. Usually they rate the appliance for noise.
Crushing paper, electric can openers and dropping ice cubes in empty glasses are also difficult. Alternatives: fold paper and then dispose of it; get a manual can opener (they work great); and try filling your glass before dropping the ice cubes in. These are small considerations that mean a great deal to us.
Another great help is putting heavy felt cushions on all kitchen cabinet doors and drawers so they do not bang when they are closed. Also, try to deactivate the beep on your microwave. One beep would be plenty, but most microwaves beep three and four times.
Clothes washers and dryers are uncomfortable to listen to. If possible, close the laundry room door while they are in operation or install a door (full or bi-fold) to help us out.
During the summer take advantage of outdoor picnics or eating in the back yard. That way sound is not confined to four walls, and we love it. The great outdoors is our favorite kitchen.
The most ideal heat in home is hot water heat. It is the quietest and no fans are running. Forced air may be tolerable as long as the bedroom is not located near or directly above the furnace. Heat pumps are offensive and often make banging noises. Window air conditioners are also a problem. Central air conditioners are by far the best but keep the fan rpm's (revolutions per minute) at a moderate range.
Also, try to fine tune your door closures so they close quietly. Be careful on windy days. Door closures are the worst maintained part of any public building. Many buildings have doors, which screech when they open and bang when they close. It is a good idea to always open a public entrance door slowly and keep your hand on it until it closes to prevent any surprises (remember - dynamic range!).
Conversations must also be addressed. When adults and children talk, they frequently raise their voices to be heard. The problem starts when one person begins talking before the other one has finished. The only way to accomplish this is by raising your voice over the volume of the other person, which is a technique used when someone wants attention and insists on being heard. I call this "overtalking", and we are in trouble when this happens. Be very sensitive to this.
Many times autistic children in strange surroundings will suddenly leave the security of their parents hand and run outside for seemingly no reason at all. This in a small way gives you a hint as to how distressing conversation can be to us. It shocks me how doctors, audiologists, and adults who treat and care for sound sensitive patients raise their voice or laugh at an unbearable volume while we are in their presence. Many times we have to be very assertive and remind these individuals to "be quiet." This is the only way these people become convinced that we have a problem.
Always remember this - if you ever have to apply for disability, it is not important if your doctor understands what hyperacusis is all about. It is just important that he/she believes you and is willing to back you up by filling out the necessary forms to secure disability. For this reason, you must be firm with doctors to quiet down and/or wear ear protection in their presence. Sometimes even world-renowned medical clinics and hospital with hearing specialists JUST DON'T GET IT! Sometimes you need to ask them, "Why is it so hard for you to talk softly and be sensitive to the problem I have with my ears? You have no idea what I am going through as evident by the way you conduct yourself when you are with me."
At this point in time, the world is very sympathetic to the deaf or hearing impaired (as they should be) but no consideration is made for those of use who are sound sensitive. It is time doctors get off their pedestals and patients get off their knees. Remember that they are working for you and getting paid very well for it. Loud conversation is the reason why we find it very difficult to be part of family gatherings. We feel bad that others become constantly guarded when we are in their presence and yet we depend on their sensitivity to our condition.
It's another Catch 22 situation. NOTHING means more to us than being with our loved ones - so don't think for one minute that we do not want to attend special functions or be with you. It breaks our heart every time we have to be left out of special events because of our ears. It also breaks our heart when you feel that you should not go somewhere because it is too noisy for us. For that reason, when you are away from us, enjoy yourself. We hope you make all kinds of noise to make up for the quiet times you have to be with us. It is sad for both of us.
Unfortunately, fun almost always involves noise. Over time we learn ways to have quiet fun. Over time, we learn that there are many things we can do in a slightly different way, and still enjoy ourself. For example, we can rent movies rather than go to the movie theater. We can have our family or spouse take a video camera to an event we cannot attend. Once they get back from the event, particularly if your children were part of the event, watch it with them when they get home. Not only will they get a kick out of seeing themselves on TV, but they will be sharing the moment with you.
Life goes on and you will eventually find great fun in doing things in slightly different ways. Learn to be creative! After all we have mentioned you can now understand how the wedding ritual of people clanging their silverware on glasses for the bride and groom to kiss just drives us wild. If you have one of your children getting married just use the new ritual of having people sing songs which includes specific words (love, marriage, etc.). This is much more tolerable and entertaining. There are many other creative ways to do this.
Sometimes you may notice we are talking softer, sound hoarse, or even whisper. This can be for three reasons:
1. We may talk softly or become hoarse if our ears are particularly bad and we have incurred a recent noise injury. Sometimes it is even difficult for us to hear our own voice if our ears are having a bad time.
2. As mentioned before, our ears are most sensitive in the early morning and late evening. This has an effect on the volume of our voice.
3. We tend to talk softly because it often evokes a soft, low volume response from whomever we are speaking to.
Women and children's voices are usually an octave higher than men's. For this reason, men teachers may be easier for a sound sensitive child to hear and ultimately learn from. Final point on voice - if you have hyperacusis and need to raise your voice to get attention, it is better to cup your hands around your mouth. This method protects your ears from the loudness of your own voice.
Other things that are difficult are coughing, sneezing, clapping, and loud laughing. Many people add sound to their sneeze. This sounds funny but is true. Many people also laugh extra loud to show their appreciation for how much they are being entertained. If your spouse has hyperacusis and you are relaxing in bed together, keep a couple of things in mind. Rustling newspapers, tearing out coupons, loud yawning, belching, and snoring are all problems.
If you question our ear problems because we snore, remember that we cannot hear ourselves when we are sleeping unless a sudden loud sound occurs. A difficult situation is when one spouse has hyperacusis and the other has hearing loss. Their ability to live and sleep together is summed up in one great word - LOVE.
A word about clapping. If you go to a public event and you know clapping or singing will be a part of the festivities - sit in the last row. That way no one is clapping or singing in your ears. Sometimes clapping can happen in the most unexpected places - like church. In those surprise situations, you can always put your fingers in your ears. Fingers are great ear protection in a pinch. If you are embarrassed to do this - you must get over this feeling because nothing is more important for your ears than protecting them against loud unexpected noises.
Some churches have services without music, and these should be attended if at all possible. Some of us sit inside chapels, mother's rooms (when no babies are present), the vestibule of church, or the clergy's room (sacristy). Another option is to go to an early morning service or watch a religious service on television. We all send many prayers to God - He is our greatest strength!
Television can be difficult unless a few things are kept in mind. Commercials are always louder. Most recently Magnavox introduced televisions which utilize a new technology called SmartSound. This automatically reduces the volume on the TV when loud commercials are being aired. This is a wonderful sound leveling feature that should be considered for anyone with hyperacusis. Televisions with remote control are great for us also. Then we have complete control over the volume and mute buttons. If you have a stereo TV, convert the sound to "mono".
Before you turn a TV or radio OFF - turn the volume off too. Starting a car and being blasted by the radio is very difficult (dynamic range). Most TV's have an oscillator that emits a high frequency around the 16,000 Hertz level. Most people cannot hear this, but often we are able to hear this high pitch noise and it is very irritating. We cannot hear the oscillator is some televisions. This becomes a trial and error thing when we are shopping for a new TV. There are no brands that can be recommended that are free from this high pitch at this time. Some get better as they warm up, some barely have it, and some are very bad. Consoles are better than portables in regards to this high frequency.
Many of us have difficulty riding in a car, bus, train, and especially an airplane. Road noise entering the car is hard, particularly if the windows are open. It is worse when it is a windy day. Sometimes closing the window on the drivers' side, opening a window on the passenger side, and driving in the far right lane of traffic may help. If you are the owner of a car, electric windows are a must so that you can control the noise entering the car. Learn to be a control person (with noise that is).
Blacktop roads are quieter than concrete roads because they have fewer seams (cracks). Consider driving on less frequently traveled roads. Road noise is particularly bad when the road is wet. The whine created by tires on wet pavement is high pitched. Sirens are very distressing for us. When you hear one coming close all windows before it passes.
Many of us are unable to walk on the sidewalk where there is any amount of traffic. If you take a walk, drive to a quiet area and walk your heart out. Cars are starting to be made with soundproofing. Which conservatively priced cars are quiet? Again, buy a Sound Level Meter from Radio Shack to find out for yourself. Never start your car or beep your horn when we are right next to the vehicle, this just blows us away. Close your car doors quietly, and do not use the automatic garage door unless we are in the car with the windows closed or we are in the house.
When car alarms go off we are either running or making a quick departure with our fingers in our ears. The chime or bell ringer on newer cars for signaling ignition start up and seat belts should be removed no matter what your mechanic tells you about safety standards. Although some dealerships may refuse to remove this, they can tell you where it is located and it is relatively simple to unplug it yourself. If your condition is explained to them or you show them this supplement - most will take it out for you. Some dealerships have even called The Hyperacusis Network to ask if this sound sensitive customer is 'for real' before disconnecting some of this safety equipment. They may still insist on you signing a waiver to free the dealer from any liability, but in many instances it is well worth it.
Many with hyperacusis make application to the National Highway Traffic Safety Council to deactivate their air bags. These application forms are available on the Internet. The mere passage of the American Disabilities Act is an indication of how compassionate people are getting of individuals with a disability. This is very encouraging for people like us even though our disability is invisible.
People with severe hyperacusis have a difficult time securing disability or Workman's Compensation because there is no objective medical test that will confirm our condition. Hearing tests are designed to detect hearing loss. Again, your best defense in securing disability status is having a doctor who believes you to the point that they will fill out the necessary forms and 'stand by you.' It is not necessarily important that they completely understand your condition. Your goal is to make them believe you and how this has impacted your life and - if necessary - your ability to work.
Some employers will be very cooperative and make 'reasonable accommodations' by moving you to a more sound friendly environment at the work place or change your job description. Malls, gymnasiums, restaurants, and indoor pools are very difficult. It is like the acoustics in our ears are gone.
Whenever we are indoors and hear an echo - we are in trouble. Rooms that have acoustical ceiling tile, carpeting, window treatments, and lots of furniture help. Shopping malls with high ceilings are bad - particularly eating areas. To make matters worse, some have water fountains with splashing water. It can help if we spend most of our time in shops rather than the center walkways of a mall.
In restaurants, try to be seated away from the kitchen or dirty dish islands. Restaurants that have the employees tossing dishes in baskets throughout the dining room are killers. It is better to go to a restaurant where the waitress takes the plates and silverware away on a platter. If you eat during off-hours (before 11 A.M., after 1:30 P.M., before 4:30 P.M., or after 7 P.M.) it is much better because the noise level is way down. If you go to a new restaurant, just ask the hostess to put you in the quietest area they have. They usually know where these places are and can accommodate you. Stay away from eating places that play loud music because people tend to talk louder to compensate for the noise. Fast food restaurants use a high pitched beep to signal when French fries are done. The beep is so high pitched that it almost makes our ears quiver. Find a place in a fast food restaurant as far away from the kitchen as possible. Also, do not be seated in tables directly under ceiling speakers. We hate to eat with earplugs in because we hear the sound of chewing and swallowing. Many of us will do it, if it means being with our family.
Movie theaters are very noisy places. Many of us cannot go to the movies and we miss them dearly. Sometimes it works if we go during the week because theaters turn down the volume since fewer people are in attendance. Even if they do not turn down the volume, they may be more receptive to your request. Some of us go, but have to use major ear protection (foam earplugs and/or earmuffs). Many theaters are beginning to install infrared sound systems that allow the individual to wear an apparatus and adjust the sound to their own comfort level. These are designed for the hearing impaired to increase the volume, but they offer us no benefit.
Renting movies can be very enjoyable. Although very few are still in existence, drive-in movie theaters are great because you can adjust the volume through your car radio. Some old-time theaters still have speakers up front rather than surround sound. Then we can sit in the last row and sometimes get by with very little or no ear protection. We love old theaters that do not have surround sound. No matter what - always sit in the back row, so no one is shouting behind you, and try to get to the theater early.
Drugs cause hearing problems. The American Tinnitus Association offers a list of drugs which have been shown to be harmful to hearing. The only general pain reliever that is known safe for ears at this point is acetominophen - Tylenol.
Many also refrain from caffeinated beverages, alcohol, or chocolate (except in a weak moment - HaHa!). Some are not affected by caffeine and find it has no affect on their sound sensitivity.
It is common for many of us to go through a period of sleep deprivation when we first come down with hyperacusis. We feel so wired for sound that it is hard for us to settle down. Melatonin, which is a safe and newfound hope for insomniacs, is very helpful for those with hyperacusis.
Many in the network may initially need an anti-depressant (tranquilizer) just to sleep at night. Since stress makes any condition worse, it is vital that we get a good night's sleep to give us strength for the next day. This is crucial during the traumatic onset of hyperacusis. Ativan, Klonopin, and Xanax are commonly used drugs for individuals with tinnitus or a collapsed tolerance to sound. They may have habit-forming side effects, but if one gets no sleep - the stress becomes more difficult than the experience of have to deal with a drug, which may be habit-forming.
As sound tolerances improve, patients tend to have little difficulty weaning themselves off drugs that have helped initially. Consult with the doctor when taking any medication. Since our ears are most sensitive in the morning and at night, alarm clocks are hard. Even alarm clocks in a nearby bedroom are difficult. Clock radios are better, but keep the volume down. A great idea for an alarm is connecting your bedside lamp to a security light switch timer. Set the timer as the alarm. When the timer cycles in - your lamp turns on and wakes you very quietly. Bose just introduced a clock radio that slowly turns the volume from zero to a preset volume when the alarm goes off. Keep bathroom doors closed if you get up before we do. Vibrator wristwatches are also available and prove to be a gentle way to wake up in the morning.
Sound cancellation is a new technology that will be utilized in many appliances and forms of transportation in the future have been shown to be useful to us. What is important for you to understand is that the goal of this technology is to completely cancel out specific frequencies of noise to achieve zero sound. In the future it will allow people to travel in a car in nearly total silence thereby allowing its passengers to carry on conversation at near normal levels and fully appreciate the stereo music coming from their radio without having to raise the volume to compensate for road noise.
A headset has recently been developed which cancels out very low-level frequency noise. It works well at canceling out the low-level frequency noise generated from the fan on the hard drive of a computer and reducing the whine of a jet engine when traveling on an airplane. I mention these two applications, because these are some of the few ways this new headset helps us in areas that are difficult for us to tolerate over a prolonged period of time. This electronic headset is battery operated and is called the QZ2000 (costs about $200). You can obtain this headset direct from the manufacturer by calling Koss Electronics at 1-800-872-5677 and ask for Consumer Sales.
Many people buy this unit thinking it will cancel out all sounds like people's voices or music - wrong. Noise cancellation appliances at the present time are only canceling out low frequency noise. They are reluctant to manufacture headsets which cancel out high frequency sounds because many high frequency sounds include things like sirens, alarms, and other signaling warning sounds that protect people from danger. Other areas that the QZ2000 headset helps is reducing the sound of leaf blowers, lawn mowers, circulation fans, and ventilation noise. Low frequency noise like this is relatively easy to cancel out.
High frequency noise is much more difficult to cancel out and is currently best achieved, at low cost, with foam earplugs or earmuffs. Earmuffs are cups that actually cover the entire ear whereas foam earplugs are inserted in the ear canal. These are not electronic devices. One of the best values in a comfortable earmuff, which provides twenty-nine decibel worth of protection, is called the Thunder 29. Cost is approximately $25.00 and is available by calling Lab Safety at 1-800-525-7233. Flents and Aearo both make foam earplugs that come in three colors: bright yellow, flesh, and ivory. Although Flents are readily available throughout the country, most of us prefer the Aearo E-A-R "Noise Filter" flesh colored foam earplugs.
The flesh-colored plugs are more cosmetically attractive but are almost impossible to find. Foam plugs are easy to insert - you just roll them between your fingers and quickly insert them in the ear canal. Next, you hold your finger against the very end of the earplug until it expands. This allows the foam to take the shape of your inner ear, and then you have very good ear protection in place. They are relatively comfortable but they do take getting used to. If you get the flesh-colored ones, most people do not even notice you have them in.
Foam earplugs can also be cut in half with a sharp instrument for mild noise protection. If you would like to try some out, call any safety supply company in your area and ask for the industrial yellow foam plugs. They are the same as the flesh colored ones except they are bright yellow. Foam earplugs should only be used in surroundings where the noise is too loud. Foam plugs put a slight pressure on the inner ear canal, but this is not harmful in any way.
Removal of the plug is easy - you just pull them straight out. In 60 seconds they will return to their original shape. None of us use plugs unless we absolutely need protection. If the surrounding is safe and quiet always take the ear protection out. Eventually we learn to trust our instincts. Finally, foam plugs lose their resiliency. Some wash them, but wax does not wash off very easily. Others use a new pair of foam plugs each day or whenever they get soiled with wax or dirt - you be the judge.
You also need to know that when we wear earplugs we are poor at judging the volume of our own voice. Try plugging your ears with your fingers and listen to how loud your voice sounds - very loud! For this reason we tend to either talk too soft or too loud when we have plugs in our ears. It is not uncommon to have a closed-in feeling when we have plugs in our ears. Initially this can create some anxiety, but after using them many times you will become accustomed to the feeling. We are fortunate to have a product like this at our disposal and they should be carried with us at all times. They also allow us to be with our loved ones in areas were there is medium level noise.
The Hyperacusis Network buys foam earplugs directly from the manufacturer, which are flesh colored. Since people with hyperacusis usually carry foam earplugs with them on a daily basis, flesh colored foam earplugs are very popular with people who have hyperacusis. These special earplugs are sold by the network at no profit and will cost you less than half of what you could buy them for elsewhere - if you could find them! Flesh colored foam earplugs are almost impossible to find through your local retailer. If you would like to purchase some from the network, simply call 1-920-468-4667 after 6 P.M. CST to find out the current price. Otherwise inquire by email at firstname.lastname@example.org
Most of us have difficulty talking on the telephone. Consider purchasing a Handset Amplifier from Radio Shack ($25.00) which has a volume and tone control. If you reduce the volume and tone control all the way down, the normal ear can barely hear anyone talking on the other end. The unit can be velcroed to the side of any existing telephone, and can easily be readjusted when someone else in the family uses the phone. Also, please make sure to turn the ringer down on all your phones. If needed, you can buy a strobe light box made exclusively for the telephone from Radio Shack. It has three adjustments - flasher, ringer, or both. A wonderful business phone system is the Partner Plus by AT&T. What makes this system so unique is that you can control the volume of the three problem areas - incoming audio, ringer, and speakerphone. The volume on all three areas can be reduced below normal (normal to the normal ear) limits.
Ranch homes are quieter than multi-level homes, and masonry homes are quieter than non-masonry homes. If you are building a two - story home, insulate the interior walls, floors, and ceiling round your bedroom if necessary. Use lots of carpeting, and do not put the air conditioner compressor near your bedroom window. Use cast iron drainpipes on a two-story home to significantly reduce the sound of water draining through the pipes. It is important that our living quarters not be near interstate highways or heavily traveled roads. We should not live in the flight pattern of an airport or near railroad tracks that are still in use. Some of us move frequently to find a more sound friendly neighborhood and home/apartment.
Noisy pets are very upsetting. Loud barking dogs or chirping birds are the worst offenders. If you are visiting relatives or friends and you know they have an excitable pet that makes noise, wear foam earplugs until they have gotten used to you. You can always take them out once the pet gets acquainted with you.
Those who have careers in noise-filled environments (i.e. construction, music, etc.) may have a disappointing career move, depending on how compassionate and/or accommodating their employer may be in assigning you to a less noisy work environment or helping you find a different position in the company. Now that we have the American Disabilities Act, employers are required to make reasonable accommodations for you if you cannot tolerate the noise in your job. You may also choose to actively seek work elsewhere. All this depends on the severity of your problem. Only you can make this decision. One thing is for certain - you do not want your ear tolerances to deteriorate any further.
No matter what, your condition cannot be hidden and must be explained to your employer. This supplement will help you do that. If you do clerical work and use a typewriter - ask to be retrained on a computer. Remember that the whine of the fan to cool the hard drive on a computer is soft, but high pitched. Fortunately, the QZ2000 noise cancellation headset or foam earplugs can help you with that. If you get to choose a new computer, the network can give you some recommendations on quiet computers.
Some printers are quiet considering the dreaded alternative of a dot matrix printer. Photocopy machines and typewriters are difficult for us when they are in operation. Your tolerances may depend on the acoustics in the room and how tight your working quarters are.
Don't get discouraged - you can still reach for the stars even though you have delicate ears. Sometimes it takes us a while to understand just how much potential we still have in us. Encouragement from others helps greatly. Check consumer-rating publications whenever you are shopping for a major appliance or automobile. Some magazines are finally including ratings for noise. These are very helpful and often allow us to select the best product without having to listen to it first, or measure it with a sound level meter.
It is very difficult when individuals with hyperacusis must have dental work done on their teeth. Most feel it would make good sense to wear foam earplugs while teeth need to be drilled so that the sound would not further affect their sound tolerances. Actually, the opposite is true. When dental drilling is done, most of the sound comes from bone conduction. It is more important to leave ear protection out but have the dentist take regular intermissions (every 30 seconds) so your ears can rest. Wearing ear protection traps the sound inside your head and this is more troublesome to your ears. Recent new technology has produced a tool which works like a miniature sand blaster rather than a drill. This procedure is much more compatible to our ears.
Some of us have problems with wax buildup in our ears. If you have sensitive ears, never have your ear doctor flush out your ears with water. The noise is far more than our ears can stand. Earwax must be removed manually. Ear doctors do not like removing wax manually, but there are so many people over the years that have come down with tinnitus and/or hyperacusis from their ears being irrigated to remove wax, it is a clear danger to our ears. Other methods include over-the-counter wax softening drops. Even this procedure, if directions are followed can work well. This will sound overwhelming, but remember - anything you and your family learn from this point will help a great deal.
Speaking to families of loved ones that have a collapsed tolerance to sound - we appreciate all you do for us. You are extraordinary people to handle our special needs. We wish you could attend a local support group in your community to help you cope with this, however hyperacusis is just too rare. Hyperacusis will have an impact on your social life. True friends will remain true - just don't shut them out. Start out slow by entertaining at home (one on one).
To those family members who question the difficulties we experience with our ears - you are our added misfortune in life and give us an additional cross to bear. Hyperacusis is an extremely rare disorder that may affect less than 1 per 50,000 people. It is no wonder so little is known about it. Most medical dictionaries do not even list the auditory disorder and most doctors have never even heard of it. What can be done? Is there currently a cure for hyperacusis? Where can I go to get help?
First of all, there is no cure for hyperacusis at the present time. Immediately following the sudden onset of hyperacusis, the individual may want to use some ear protection when you are in surroundings which are too loud. During this initial critical stage, some cannot even tolerate the sound of other peoples' voices, let alone their own voice. At this time it is important to try to calm yourself and realize that this is not a life threatening condition and is treatable.
The best parallel to this would be when you burn your finger. Initially your finger is so sensitive that even the feel of air blowing across the affected area is painful. Think of your ears as having been burnt. This critical stage can last for many weeks because ears recover very slowly. Following this critical stage, it is important to start weaning your ears from ear protection so they are exposed to normal environmental sounds. This is important for one reason - although we know very little about hyperacusis, it seems clear that if we continue to over protect our ears over an extended period of time, our condition will definitely worsen. Whatever system is in our ears which protects us from loud sound must be kept active.
If ears are overprotected, that system seems to further collapse. Many times the network hears of individuals who are so anxious that they refuse to remove ear protection even in the privacy of their own home. Some even keep their ears plugged while they are sleeping, which makes the problem even worse. Eventually over a period of time (time varies for each individual) you can embark on a therapy which can improve your tolerances to sound.
The University of Maryland, under the direction of Dr. Pawel Jastreboff and Dr. Jonathan Hazell, has developed a therapy for individuals with hyperacusis that is very promising. By being fitted with a special ear appliance called the viennetone AM/ti (sound generator) the patient is told to listen to a specific sound called white noise for a disciplined period of time each day. Those in the network who have been through this therapy have realized improvement of 10% - 80%. Although this is not a cure, it can be a wonderful help. No one has gotten worse from this therapy, but there are many in the network that have had no desire to undergo the therapy.
Individuals who come down with hyperacusis become anxious with their surroundings and fear that no matter what they do they will make themselves worse. One thing is important to understand here: When a person breaks their leg, a cast is worn for a couple of months. A doctor does not tell the patient to get up and start walking after they broke their leg and a doctor should not tell us to refrain from using ear protection after we just broke our ears.
Back to the leg. After a couple of months, the cast is removed and one usually must go through physical therapy to have the ligaments in the leg stretched so they can return full flexibility to the joint. This is often very painful but necessary. Back to our ears. Eventually our ears need to be exercised so they can rebuild tolerance to sound. This is not really painful but the thought of using sound to build our tolerances is offensive because our instincts tell us that to survive - we must stay away from sound.
For this reason, many need counseling and encouragement to get through this special therapy. Sound therapy helps us realize the maximum tolerances left in our ears. This therapy is so conservative that no harm can be done to our ears. For more information, call the University of Maryland (phone number listed on the next page of this supplement) or contact the network. Because many of us have a difficult time traveling, the University of Maryland has certified hearing professionals all around the world to administer this special therapy called Tinnitus Retraining Therapy (TRT).
Don't be confused - it is called Tinnitus Retraining Therapy rather than Hyperacusis Retraining Therapy because both hearing dysfunctions utilize the same therapy. This is one of the reasons why the University of Maryland considers 'tinnitus and hyperacusis two sides of the same coin.' To help you better understand the University of Maryland's approach, the next four pages of supplement explain their theory and therapy for patients with tinnitus and hyperacusis. Although the first part of the article speaks mainly of tinnitus, be patient and read the complete approach.
Tinnitus Retraining Therapy Abstract by Dr. Pawel Jastreboff
Successful tinnitus management in our clinics is a result of retraining and relearning. Once the tinnitus loses its sinister meaning, however loud it has been or however unpleasant it may seem, it DOES begin to diminish, and in many cases may not be heard for long periods of time. In most cases firmly held beliefs are hard to change. Retraining the subconscious auditory system to accept tinnitus as something that occurs naturally, does not spell a lifetime of torture and despair, and is not a threat or a warning signal, can take months and sometimes-even years.
Such retraining should be guided by professionals with experience in this field forming part of a multi-disciplinary team. For people who also have co-existing or pre-existing anxiety or depression it can take longer to change their feelings about their tinnitus. When we talk about retraining, this is not simply an abstract learning exercise. In the subconscious part of the brain concerned with hearing, beyond the inner ear, but before the act of conscious perception of sound takes place, subconscious filters, networks of nerve cells (neuronal networks) are programmed to pick up signals on a 'need to hear' basis.
Think again of the way we invariably detect the sound of our own name, or a distant car horn, or a new baby stirring in sleep, whereas we may be unaware of the sound of rain pounding on the roof or surf beating on a seashore. Retraining therapy involves reprogramming or resetting these networks which are selectively picking up 'the sound life' in the auditory system. Although these are 'nature sounds', they become a problem because they have been identified as a threat, either to life, or life quality.
Tinnitus retraining first involves learning about what is actually causing the tinnitus. This begins with proper examination by an ear specialist followed by a full explanation of what is going on in the ear and the brain to produce the tinnitus sound. However specialists who themselves believe that tinnitus is an 'ear' phenomenon cannot help. We are in a difficult situation where the classical training of tinnitus being due to inner ear damage is still very dominant, rather than an understanding based on the neurophysiological model (Jastreboff P.J. 1990).
You may have experienced this visiting other tinnitus sites or user groups on the Internet. We need to learn that the sounds of tinnitus which we may interpret as distressing, affecting life quality, and seemingly unending, are, in reality the sounds of nature, coming from weak electrical signals in the auditory pathways which have always been there. With appropriate directive counseling (or 'retraining') from professionals, we can change even strongly held views that tinnitus is a threatening and unpleasant experience which cannot be altered.
Habituation of reaction and perception
The presence of any continuous stimulus usually results in a process called habituation, whereby the individual responds less and less to the stimulus as long as it does not have any special negative meaning. The final stage of this process is when the signal is no longer detected and cortical neurons are unresponsive. With tinnitus this means that it is no longer heard, even if it is listened for. Retraining therapy can achieve this. As the process takes a long time (often 2 years or so), during the initial stages tinnitus becomes gradually less unpleasant (but may still be perceived as a loud sound).
This process is called habituation of reaction. Tinnitus then becomes quieter for longer periods of time, and eventually disappears or becomes a natural part of the background 'sound of silence' (habituation of perception). This cannot happen, however, while tinnitus is still classified as a threat, or negative experience, that demands further monitoring.
Hearing loss and tinnitus
One way in which the ear itself does contribute to tinnitus is if there is a hearing loss. This may be quite slight, or just in the high frequencies. Any tendency to 'straining to hear' can increase amplification of sound signals in the subconscious part of the brain, and increase the ease by which tinnitus signals can be picked up. This is why it is important to correct any significant hearing loss with appropriate hearing aids, as part of overall tinnitus management. However, inept and inappropriate hearing aid fitting by those unpracticed in tinnitus management can make it worse, a frequent finding in our tinnitus clinic.
In some cases changes in inner ear function may be important in triggering tinnitus emergence (e.g. Menieres disease or acute acoustic trauma), however the retraining approach works independently of the trigger factor.
It is important to distinguish between the role of the ear in the EMERGENCE of tinnitus (e.g. disco tinnitus) and the role of central processing in the brain in the determining PERSISTENCE of tinnitus and our emotional response to it. Despite the importance of hearing loss a recent study of our tinnitus clinic patients showed there was no significant difference in hearing between the tinnitus group and normal population statistics.
Broadband sound generators
Broadband sound generators (previously called 'maskers'), have a different role to play. Tinnitus masking was at one time thought to be useful in that it simply made tinnitus inaudible. In fact this proved to be counter-productive, as tinnitus, the object of an exercise in habituation, must be audible for habituation to occur. Habituation to any signal cannot occur in the absence of its perception. Imagine trying to habituate your response to spiders, which you hate, simply by avoiding them. Much better long-term results can be obtained if white noise is used at low intensities while the tinnitus can be heard at the same time. White noise contains all frequencies, and therefore very gently stimulates all the nerve cells in the these subconscious networks, allowing them to be more easily programmed, or reset, so that tinnitus signals are no longer detected. It also reduces the contrast between tinnitus and otherwise total silence.
Silence may not be golden
Emergence of tinnitus is often dependent on silence. Most tinnitus is first heard at night in a well-soundproofed bedroom, or a quiet living room (Heller and Bergman 1953). Persistence of tinnitus depends on the meaning attached to it, but also to the contrast it creates with the auditory environment. Contrast contributes greatly to the intensity of any perception. Thus a small candle in the corner of a large darkened room seems dazzlingly bright until floodlights are switched on making it virtually invisible. Tinnitus patients should avoid extreme silence, and retraining programs will often use white noise therapy as a means to reduce this contrast. In all cases SOUND ENRICHMENT should be practiced. Make sure there is always a pleasant; non-intrusive background sound (like a large slow fan, or an open window). Choosing what is right for you may take some time. Avoid masking tinnitus, but have some sound present during day and night.
Many tinnitus patients have hyperacusis (sensitivity to external noise) and for this reason often seek very quiet environments. In this respect they are their own worst enemy! In all cases sound enrichment should be practiced, using unobtrusive sound sources (e.g. a domestic fan, an open window), to break the silence.
Although using white noise on its own can give some temporary relief from tinnitus discomfort, unless it is combined with the retraining approach, there is very little chance of permanent relief. Information and teaching and demystification about tinnitus and tinnitus mechanisms are the most vital parts of the therapy. It is particularly encouraging to receive email from tinnitus sufferers, who have obtained relief simply from reading these pages on a regular basis.
Otherwise where strong beliefs about the threatening nature of tinnitus are maintained, the survival-style conditioned response mechanisms in the subconscious brain ensure that it is continuously monitored.
At the present moment TRT is available in relatively few centers, but the techniques are spreading gradually, throughout the world. For an updated list of TRT practitioners, contact The Hyperacusis Network. Now let me share some thoughts with you by Dr. Jack Vernon, a world-renowned expert on hyperacusis. Dr. Vernon is retired from the Oregon Health Sciences University, although he has had a profound impact on the diagnosis and treatment of hyperacusis over the years.
Treatment For Hyperacusis by Jack Vernon
It is often the subject of treatments for tinnitus to introduce the topic of hyperacusis, however, we find that some tinnitus patients also suffer with hyperacusis. In such cases it is the hyperacusis that is often considered the more severe of the two problems…Thus, when both conditions are present, we usually attempt to treat the hyperacusis first, and fortunately there is a potential treatment to offer the hyperacusis patient.
Most patients and many health care professionals describe hyperacusis as "exceptionally sensitive hearing ability." We feel that is an incorrect definition…Hyperacusis is best defined as the collapse of loud tolerance so that almost all sounds produce loudness discomfort even though the actual sound intensity is well below that judged to be uncomfortable by others. Not only is hyperacusis not increased hearing sensitivity, but many hyperacusis patients actually display hearing impairment. In a survey conducted by the American Tinnitus Association 70% of the hyperacusis patients reported some form of hearing loss. Some patients with hearing loss display recruitment and not infrequently recruitment is mistaken for hyperacusis.
Hyperacusis means that the tolerance for the loudness of sounds has collapsed so that almost all sounds are uncomfortably loud. The hyperacusis patient experiences a great deal of discomfort and for that reason they seek quiet and protected places. In the normal hearing ear when the intensity of a sound is progressively increased, there will be a level at which the sound is uncomfortably loud and that point is termed The Uncomfortable Loudness Level (UCL). Usually the UCL for normal hearing people is around 100 - 110 decibels. In contrast to the normal loudness function, when very low intensity sounds produce an exaggerated loudness, discomfort; it is most likely an example of hyperacusis. In the hyperacusis patient the threshold of loudness discomfort is inversely related to the pitch of the test sounds. The higher the pitch of the sound, the less the loudness tolerance. Typically the threshold of discomfort for hyperacusis patients is on the order of 20 - 25 decibels above threshold for low pitched sounds (200 Hertz or so) and progressively declines until it is only about 3 - 5 decibels or less above threshold for sounds at 10,000 Hertz and above…
We insist that over protection of the ears will cause a worsening of the hyperacusis. Most hyperacusis patients continuously wear earplugs in an attempt to make their every day situations more tolerable. In the (ATA) survey patients were asked if they constantly wear ear plugs and 93% answered yes. This type of protection is false security and one way to almost surely make hyperacusis worse. On the other hand, hyperacusis patients, like tinnitus patients, must avoid truly loud sounds and this distinction often presents a problem for hyperacusis patients. We estimate that hearing protection is required for those sounds that are sufficiently loud as to cause one to raise the level of one's voice in order to be heard. Absence of earplugs when exposed to normal environmental sounds may produce some discomfort for the hyperacusic patient, but that kind of loudness discomfort will probably gradually habituate. Many hyperacusis patients dread doing out of doors for fear of encountering loud sounds such as car horns, sirens, signals, truck noise, backfires, and so on. To this end, Jim Nunley, Jonathan Lay and Grayson (our electronics staff) are currently developing a special hearing aid (Star 2000) with extensive compression so that sounds of any sort cannot rise above approximately 65 decibels and very low intensity sounds are amplified up to a comfortable level that is adjustable. With such a device the hyperacusis patient should be able to travel out and about without fear of an accidental loud exposure. The prototype of (the Star) 2000 is currently being tested on a hyperacusis patient and so far reports have been favorable…
Desensitizing the hyperacusis patient is a very slow process that probably depends upon how long the patient has had hyperacusis and how severe it is. The most rapid retraining we have experienced required three months; the longest desensitization period to date was two years; and the average is probably much closer to two years than to three months.
Now that you have heard from two experts in the field of hyperacusis, it is important for you to learn about The Hyperacusis Network. We share real ways to cope with hyperacusis. If you would like more information, simply contact us and we will do all we possible can for you and your family. It is natural for anyone who comes down with hyperacusis, recruitment, or hyperacute hearing to travel to any ear specialist they can find in their hometown to find help.
Many have traveled more than their ears can endure and spent more money than they can afford only to chase rainbows that ultimately end in frustration and an empty wallet. To help you in this search, we have listed some of the best sources of information on hyperacusis in the world. There is much to be hopeful about because hyperacusis is beginning to get a great deal of attention around the world. Many newspapers have featured articles on hyperacusis and most recently, magazines are interested in featuring articles on it (see the August 1995 issue of Prevention).
Our network not only educates the world about our auditory problems, but also teaches the world that life must become more sound friendly for everyone. America has few noise standards. We live in a world where many jobs require eye protection but ear protection is optional. The Hyperacusis Network sends out a free, quarterly newsletter to anyone around the world who needs help. There are no subscription fees although donations are greatly appreciated.
We are an international network of individuals experiencing a collapsed tolerance to sound. We share ideas and ways to cope with this disorder. Some members of the medical community subscribe to our newsletter. It gives them a better understanding of what this disorder is like and how to take care of us. No one knows more about this condition than we do. We can also assist you with products that can be helpful in coping with this disorder.
As a member of the network, all we ask is for you to share your experiences and ways that you have found to help yourself and your family deal with this condition. Belonging to the network also allows you an opportunity to discover people near you that also have hyperacusis. Many wonderful relationships have been found this way. We will do everything humanly possible to help you, and all information is kept strictly confidential.
The Silent One
by Helen Gleason
We silent ones don't want to hear,
sounds once loved that hurt the ear.
Our loved ones voices once so dear
fall painfully upon our ear.
The rolling waves,
the ocean's roar
we can't enjoy them like before.
The Sounds of Living,
Sounds of Life
now bring us suffering and strife.
But someday this cruel enemy
that robs life's joy from you and me.
Will conquered be, and all around
again we'll joy in nature's sounds.
So 'Silent Ones' until this day
'hope in God' thanks and pray.
Disclaimer: No person should alter, discontinue, or refrain from taking any medication or having other medical treatment or cause any person to alter, discontinue or refrain from taking any medication or having other medical treatment as a consequence of information obtained from this newsletter. Any inquiries any individual may have about medication or their medical treatment should be referred to a competent medical practitioner. While every effort has been taken to ensure the accuracy of the information contained herein. The Hyperacusis Network, authors, feature contributors, and editor expressly disclaim liability to any person for the consequences of anything done or omitted to be done by any such person in reliance, whether whole or in part, upon any part of the contents of this newsletter. The views expressed do not necessarily represent the views of The Hyperacusis Network editor, staff, and support staff.
The Hyperacusis Network
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Green Bay, Wisconsin 54311