Michelle's Hyperacusis Story

 

Michelle from North Carolina, has been dealing with Hyperacusis for quite some time now. Before her onset, she lived a full life. She could travel by plane, car, boat, sky dive, you name it, do all of the things that normal hearing folks can do. She worked in an office environment & never really felt bothered. Knowing what she knows now though, about these auditory ailments, she thinks that she has been dealing with misophonia for some time since. Certain sounds would change her mood in an instant, no pain, just uncontrollable anger. She also had a speech impediment, until a teacher worked patiently with her, she was around 10 years old, when it was corrected. 

The onset of Hyperacusis started in 2013, her ears would become full of pressure. So she would pinch her nose, blow out of her mouth, and pop her ears, much like being on a plane, she was not though. One day she did the pinch and blow to pop her ears, and she started to feel nauseated, like she was being sucked down a tunnel, and then the burning pain also started. Slowly in her right ear, it felt like a stove top burner, going from low to high, and she could do nothing to stop it. 

Michelle immediately made an appointment with her general physician, he did not see anything wrong, did not doubt her in the slightest though. He prescribed ear drops to treat, and they unfortunately did not suffice. She and her GP worked together to see seven different ENT doctors in North Carolina, doing numerous tests, which showed absolutely nothing. She was told not to use Q-tips, drink cranberry juice, the problem was in her "head", watch her sodium intake, and one doctor told her she was allergic to something in her home residence. She followed all of the professionals advice, very exhausted and beat down. 

Michelle subsequently made an appointment with Johns Hopkins, and spent over six long hours having different tests done, to the point where she thought her face was going to explode, and they found nothing, again. All she could do was cry, every moment, of every single day, as her ears were constantly burning. There was zero escape, and Michelle was constantly running, just had no clue what exactly she was running from, what would be the name of the condition that she was enduring! She moved residences three times, before putting her belongings in storage. Everywhere she moved, she was still allergic, but to what? It was maddening Michelle says, and she was wearing a noise cancelling headset all of the time, to block her ears from sounds, as she could not tolerate most sounds. 

She learned that if she turned everything off, things would calm down. Literally everything, including pulling the breaker! It was winter time, and it was challenging, because she needed heat to survive. By this time it was January 2015. Her brother in law, was a general contractor, and he built a soundproofed basement for her. She was exceedingly thrilled, at last somewhere, where she could find some peace. She never thought in a million years, that a windowless room soundproofed, would be her dream come true. Unfortunately it did not work though, as she could still hear lawnmowers outside etc. She just cried, and cried some more. 

Michelle started therapy for mental health in 1996, and was still in contact with her therapist, he was a constant support for her, and she was sad to explain to him, that she was living the way she was. Michelle had told him that she was ready to end her life, because the pain was so detrimental, this goes for many of people with their hyperaucsis at onset, suicidal ideation. She was so sad, and could not endure the constant pain any longer.  His wife is a medical doctor, and she performed a search and found Dr. Jastreboff (Neurological scientist, Audiologist). Her sister e-mailed him right away, and the Dr. asked to see Michelle the very next morning to assess. This gave Michelle some hope, she just needed to make it another day to see the specialist. Dr. Jastreboff diagnosed Michelle with severe hyperacusis, her hearing test ranged minus ten. He explained to Michelle, that her ears and her brain were not communicating together right, and suggested sound generator therapy to help. She flew back to North Carolina from seeing Dr. Jastreboff, and Michelle found that living on top of a mountain in a condominum worked best for her, where she could control her environment. She decided to start the sound generator therapy for 18 months, wearing them all day, and increased the volume of the generators in increments, as instructed, to levels she was able to tolerate. 

Michelle slept a lot, as the hyperacusis would be so draining for her, she used a sound machine at night, and Jastreboff told her to discontinue the noise cancelling headphones, that protected her ears from everyday sounds, and this was very hard for Michelle, to stop using the headset. Jastreboff encouraged her to gradually introduce herself back to sounds slowly, in everyday life, to try to increase her sound tolerance, the very thought was terrifying. If she could get the burning and pressure to just stop, it would be a miracle. She would have just stayed at her home on the mountain, instead of moving back and forth, from the mountaint to urban, a few times. She wanted to see if she could handle the noise of the city, it was just not possible though. The best way to control her symptoms, like many others, is to have a controlled quiet home environment. 

The constant strain on relationships has been a diffucult one for Michelle to navigate, and this goes for a lot of people who have hyperacusis. It's hard to trust individuals enough to open up about hyperacusis, and to tell them which exact sounds trigger the pain, in order to live and to be around society, comfortbably. Michelle has had some individuals use her hyperacusis against her, saying things like "there is no way that you can be so sensitive, to such and such sound", and even some purposefully making noises, she said that triggers the pain, to see if the sounds actually do ignite pain for her. If someone says that certain sounds are excruciating, for their auditory system, believe them, because any sound abuse incident, can turn into permanant damage, which means there is no turning back. 

Life for Michelle is very different today, the constant burning subsided a bit, and she is learning more about her triggers, and the list is long. When the pressure begins, she can't help but get anxious, because the burning pain follows. She has gone through fight mode, and there is just no point, she says. Michelle suddenly freezes when overwhelmed by sudden sound, so she tries her hardest to focus on the flight, just EXIT! It is hard to explain for her, but she goes numb when attacked by sound, like she can't pick up her keys, and just drive away. She often feels like her head and upper body is covered, with the heavy weight of an x-ray blanket, that you usually see in hospitals. Her recovery time from sound is very unpredictable, she calls it a "sound hangover", it could be a day to several days to get back to par. It all depends on the severity, of the sound abuse. She has good days sometimes, and they are amazing. Most days though, she is hibernating, like most of us, trying to calm herself down, as sound is literally EVERYWHERE! 

Michelle uses Cannabis to cope, as no pharmaceutical medications have been of any real help to her. What works for one, sometimes does not work for others, this is a very individual condition, and it depends on each person's body chemistry and pathology, to determine any treatment. Usually patients try anything, and everything to help, as there is no cure or real manageability, yet. Also being guinea pigs to experimental therapies, surgeries, and medicine. She does her best to be creative with her home environment, the refrigerator is in the garage, and she runs appliances when not in the house. She follows suggestions and advice, from other people who suffer from hyperacusis, for example some household tips for dampening sound. Michelle says, she finds a lot of good support in the hyperacusis community, and tries to stay positive to the best of her abilities. It's not always easy though, as many know. Some days are full of tears, some mediocre, and some days are better. Michelle practices Yoga, and tries her best to stay in the present moment, as much as possible. Nothing takes the pain away though.