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Hyperacusis: When Hearing Hurts

Tuesday, April 23, 2013

(flickr/neiljenkins)

"It's like the opposite of deafness," says writer Joyce Cohen when asked to describe the condition known as hyperacusis. "Instead of sounds sounding softer, it's that... sounds are louder and painful." 

Cohen recently wrote about hyperacusis for Buzzfeed. It's a condition that she herself has been living with for about 6 years, and in her piece, she describes how it has affected her quality of life. "It felt like my ears were being filled with burning acid," she writes. "On a scale of severity from 1 to 10, I'd give the pain a 9, maybe a 9.5." Although her condition has since improved, Cohen still takes special care to protect her ears, and avoids environments that could cause her pain.

Her piece also profiles several other people who have experienced hyperacusis -- including three who took their own lives. 

"We are so much in the dark ages about this, that it's hard to think that there's going to be any kind of treatment or cure in any sort of reasonable time frame," she tells us. "The situation is very grim." 

Guests:

Joyce Cohen

Comments [8]

Dolores Claesson

https://www.google.com/search?q=sister+of+journalist+who+commits+suicide+with+hyperacusis+and+lyme&sourceid=ie7&rls=com.microsoft%3Aen-US%3AIE-Address&ie&oe&rlz

Feb. 11 2014 04:55 PM
Dolores Claesson

Joyce and Ben. Many of us with lyme disease have hyperacusis and tinnitus etc. Please, since you are in the North East get tested for Borrelia with a western blot and not ELISA or C6 peptide test and you might also test for reactivation of herpes viruses and some common co infections. All the best of luck. One newscaster's sister had horrible hyperacusis and committed suicide.

Feb. 11 2014 04:54 PM
Ruth from Iowa

I thought I was listening to my own story through Joyce.In 2010 I was diagnosed with migraines with high sensories.Noises...any were blasting!Eyes...lights were terrible.....Smells....drove me to an instant migraine.I could have 5-10 migraines a week with medication. I do not know what caused any of this but the Noise definatly sounds like Joyce however...right now my ears are not as sensitive as they were. I did work at a daycare at the time I developed the migraines/sensories.I remember all of a sudden asking the owner of the daycare "Aren't they awful loud today".First came the headaches,then the lights bothers me then the smell..dirty diapers..then the NOISE.We live just a couple of blocks from where they blow the 12:00 siren....I would watch the clock to try to get ready for it.I carry earplugs with me and kleenix to stuff in my ears to cushion any noise I ight encounter.Thank you for bringing out your story.I am so hoping you can find help in doing SO.I feel for you Both!

Feb. 07 2014 10:52 PM
Ben

I got hyperacusis from hearing a gunshot (ear plugs didn't work).

Tinnitus retraining therapy was very very helpful- it reduced my hypearcusis about 98% over six months. Unfortuantely, I had a milder relapse later after hearing loud bagpipe music. I've re-started the therapy and am improving again.

I urge anyone with hyperacusis to find a good audiologist and do the therapy. Its worth every penny. It may not work for everyone, but it saved my life from being a living hell.

Jul. 10 2013 09:37 AM
David Cox from Paris, France

Ms. Cohen's condition, opinions and strategies are very much like mine. Pink/white noise treatments are touted as working in 90% of cases, but no medical specialist I've consulted will discuss the possibility of misdiagnosis as reason for the failures. The suggestion of misdiagnosis should (but oddly doesn’t) elicit their intellectual curiosity. I empathize with amputees. After 25 years with hyperacusis, I've the feeling that this valuable, though intangible, part of my body will never “grow back”. I agree with Ms. Cohen’s advice to avoid MRIs. I totally disagree with doctors’ frequent advice to avoid over-protecting. I know the importance of protecting myself from the devastating effects of cumulative exposure to painful sounds – and that includes doctor’s offices.

May. 18 2013 11:20 AM
Hope

Ms. Cohen believes we are “so much in the Dark Ages about [hyperacusis] that it’s hard to think that there’s going to be any kind of treatment or cure” anytime soon and that “so little is known about [hyperacusis] that doctors generally can’t help.” Cohen is mistaken. Treatment currently exists for hyperacusis and it has helped countless patients, regardless of the severity of their cases. Some patients are cured. Some individuals with tinnitus develop a degree of hyperacusis which often resolves over time. Individuals who have hyperacusis or think they do are well-advised to seek out doctors who are knowledgeable in diagnosing and treating hyperacusis.

Cohen incorrectly claims broadband noise therapy to treat hyperacusis “may work in mild” cases. Broadband noise therapy is helpful for many hyperacusics, whether they have mild, moderate or severe decreased sound tolerance. Overseas, a psychotherapeutic approach called Cognitive Behavioral Therapy is also currently used to treat hyperacusis with some success.

Cohen states “noise trauma is like sunburn; there is a delayed reaction and very, very few warning signs.” This is also incorrect. When the auditory system is exposed to loud noise, such as a gunshot or an explosion, the reaction is often immediate. Even when it is not immediate, there are usually warning signs. In addition to very loud sound, hyperacusis can be associated with Bell’s palsy, Ramsay-Hunt syndrome, stapedectomy, perilymph fistula, migraine, head injury, Lyme disease, and other conditions.

Cohen’s view that ENTs respond to patients who present with hyperacusis by telling them they are “crazy” and that “the ear can’t possibly produce this kind of pain” is not true. ENTs known as neurotologists and other doctors called otoneurologists who specialize in the ear can be quite good at diagnosing and treating hyperacusis. Few, if any, doctors or audiologists would deny that patients cannot experience severe pain in their ears.

Hyperacusis is not the opposite of deafness, as Cohen stated. The opposite of deafness is called hyperacute hearing. Hyperacusis is an abnormally strong reaction to sound that occurs in the auditory pathways. Individuals with hyperacusis experience physical discomfort or pain due to exposure to sound. The same sound would not evoke a similar reaction in the average listener. The strength of the reaction is controlled by the physical attributes of the sound, such as its spectrum and intensity.

Apr. 25 2013 02:02 AM
A. from NYC

I did not have anywhere like the level of hyperacusis that your guest and her husband have, but I am very concerned about her absolutely negative message - no one knows anything, no one can do anything. Therefore, I would like to summarize my experience and where I found help.

I developed tinnitus and hyperacusis in 2004, out of the blue, at a time when I was under great stress. I could hear my hair when I touched it and speech sounded very different. I walked out of meetings in tears. Tthere was a constant hiss in my ear. I went to my dentist - not TMJ - and an ENT at NYU who walked in telling me there was nothing that could be don, which was like hearing that He had put a curse on me.. I had a panic attack. I became very claustrophobic, saw a psychiatrist and went on meds.

Then I hit the Internet. I eventually learned about Tinnitus Retraining Therapy at http://www.chchearing.org/about-hearing-loss/tinnitus-hyperacusis and called. I was told to see their then medical director, the ENT J. Thomas Roland at NYU. He had me tested to rule out an acoustic neuroma, and referred me for treatment.

I met with an audiologist trained in Tinnitus Retraining Therapy and she did extensive hearing tests, ensuring that nothing triggered my claustrophobia. She then explained the cognitive treatment. We decided against masking devices to be worn at all times. Instead, I would have music play constantly, at a very low level, including when I sleep. This was to teach my mind to ignore the sounds while her explanations of my test results and the relevant anatomy to deal with my anxiety. It was a 24 month program but, after the first few appointments, they were months apart. And I was not to talk about, think about or read about either tinnitus or hyperacusis.

The murmur of Gregorian Chants in my office for the next year drew no end of odd looks.

At that time, the treatment cost $2,000, most of which was not covered by insurance.

Within weeks my hyperacusis was GONE. By the end of my treatment, I had no problem with tinnitus, which was still there except my mind generally ignored it. Writing this, I am hearing it, but I know it will recede.

The audiologist was very clear that no one knows what causes either hyperacusis or tinnitus. In the past, people drove nails into their ears to stop the noise, which persisted.

I avoid loud noises and carry musicians earplugs with me. I still sleep with music playing very low. And I don't use headphones, at my audiologist's direction, because they cause my mind to hear the tinnitus. I have been off meds for years.

The treatment, focused on tinnitus, has an 80% success rate. I am one.

I am NOT saying that this will work for everyone. But I did want to counter the message of hopelessness that was presented and give people reading this a suggestion for where to get help. Tinnitus Retraining Therapy is available nationally and internationally. And finding the right doctor is a problem with any complex medical problem.

Apr. 23 2013 10:31 PM
Sarah from Brooklyn

I enjoyed listening to Joyce's comments about hyperacusis, because I have a condition known as misophonia, which is much less severe, but perhaps equally as unknown and poorly understood. I have suffered with the symptoms of misophonia since I was a little girl and my sister used to do things to trigger it because she was a typical teenager. :) I never even knew there was a name for what I have until a couple years ago, when she sent me a NY Times article about it. I read it and immediately identified!

Apr. 23 2013 10:06 PM

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