The first time 56 year old Kirsten Jahr from Norway, noticed some sound sensitivity was in 1996, and over the years it slowly became worse. Kirsten was a violinist and violin teacher, but it became impossible to play in an orchestra. Dinners with many colleagues resulted in “flight reactions”: She suddenly couldn't stand the noise anymore and ran out, crying.
In 2007 Kirsten went for a holyday in China. Her image of a country with rice fields and bicycles tuned out to be a bit old: She came to “New York” with a lot of noise everywhere and her custom made earplugs which dampen 25 dB were not nearly enough.
After some “flight reactions” her hyperacusis suddenly “exploded”: All sounds seemed much louder, as if someone had turned up the volume. Some sounds were painful, like driving in the bus.
One week after her terrible flight back, Kirsten was no longer able to sit in a car because it sounded too loud in her ears, and she was unable to attend her own father’s funeral.
Kirsten’s GP (General Practitioner) gave her a sick leave, but didn’t help her. When she told him she believed she suffered from hyperacusis, but soon realized he knew nothing about it. He was not even able to spell it correctly.
Kirsten started to gather information, but much of it was wrong or contradictory. Like:” Use earplugs” and “Do NOT use earplugs”. She found out who the best ENT (Ear Nose Throat Specialist) for hyperacusis in her country was, but his waiting list was too long, nearly two years. Instead Kirsten managed to get another ENT to come to her home, but his treatment didn’t help.
Her sound sensitivity got worse and worse, faster and faster. Kirsten called the ENT and told him she was going over her pain level many times a day. She started to eliminate as much noise as possible. The problems got serious when it became too painful to put the earplugs or earmuffs on. Turning a page in a magazine or touching a plastic bag was painful.
The noise of the few passing cars outside her house became too loud even when she was inside, so Kirsten Jahr had her brother insulate the windows in two small rooms with a thick layer of insulation and she lived there. Kirsten remembered what it sounded like when he carried the television down the stairs; he sounded to her like a horse of the size of an elephant! She watched the TV with the sound off, and instead read the text for the deaf (hearing impaired captions).
One of the worst sounds was from running water, and having a shower or bath was impossible. Kirsten’s personal hygiene dropped to a none acceptable level. Because she couldn’t wash anymore, she cut off all of her hair, horrifying fun and with an incredibly ugly result!
She realized that this was going the wrong way, so Kirsten called her GP (General Practitioner). Kirsten recalls that day she was incredibly lucky, because he had a substitute! She asked him to contact the best ENT for hyperacusis in my country, Dr. Tjell.
Practically all sounds were painful, even walking on the floor with two pairs of thick socks started to be painful. How was this going to end? At one point she phoned her own GP and told him she needed readymade food delivered and some practical help. She also made him aware that she needed medical help NOW, so could he please phone Dr. Tjell?
Kirsten’s GP came on a surprise visit. He had to walk through the snow to her terrace door (I couldn’t open the front door), and just whispered. Once inside Kristen told him he had to sit still, because his leather jacket made too much noise. By this time her doctor “suggested” she go to a mental hospital!
This is what Kirsten had to say: ‘He nearly scared me to death. The thoughts of having to drive in a car, nurses with shoes on and trolleys with clattering coffee cups - it became too much for me. I have never been so afraid in my life! Luckily I had a friend who was a psychiatrist, and she saved me from the hospitalization.’
Later on, when Kristen had another GP, he let her read the old case sheet where Kirsten’s past GP had written that she was psychotic (and worse). He had all the time believed that hypercusis was a purely mental disorder!
Then there was the food…
Kristen had been promised food and help after a week, but it lasted 40 days before they managed to give her that! One of the problems was that the requirements for these services were not fit to her disability.
A surprising twist!
Kirsten got a letter from the ENT Dr.Tjell, telling her how to use music as a therapy. It WORKED! Kirsten got surprisingly better and better.
What she did?
‘I simply listened to music of my own choice, a bit louder than comfortable, but not so loud that I suffered. I started with a minute or two a day, and slowly increased the length to maximum one CD a day. I used music with an even sound level. My recovery was remarkable, and after six months I was able to drive my car and was able to go shopping.’
But her recovery slowed down and finally stopped.
In 2009 Kirsten Jahr had a terrible setback, she could not even whisper because of sounds like S and the “Ch” like in “church”. At this point she began to use the pink noise CD from The Hyperacusis Network.
From there Kirsten started TRT (Tinnitus Retraining Therapy) and got wearable sound generators. They also gave her a machine that made different sounds which she use as sound enrichment at night and when it is too quiet.
Final note from Kristen Jahr:
'I have had lots of setbacks since then, and they are always caused by noise. I have not been as bad as before, but not so well either. I am 100 % disabled. I can’t sit in a car or do my shopping. Only in my very best periods am I able to go for a walk in the quiet streets where I live. I miss playing my violin, but even more I miss a normal social life. I can’t visit anyone, and can only have very quiet visitors. But thanks to Bose’ noise cancelling headphones I am able to work in my garden when it is quiet outside, and that is a comfort.’
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