I’m Tess, 32 years old and I would like to tell my story about how my life changed when I acquired (pain) hyperacusis and tinnitus.
In 2019 I went to a concert in Amsterdam with my partner, Lotte. This was a relatively small, closed hall. I forgot my ear plugs and the concert was too loud for my ears. Despite it being too loud, I did stay until the end. When the concert was done, I noticed pressure in my ears and a gnawing painful feeling. I thought this would go away after a night of sleep.
The day after, my ears were still fragile, and I also noticed some minor ringing in my left ear (tinnitus). A few days later the pain was gone, but the tinnitus remained.
I’m a fan of Taylor Swift, so when they announced she would perform in Amsterdam in July 2024, I wanted to go to her concert. I’m certainly no concertgoer or a person who goes out a lot to parties and the like, but I did not want to miss that experience. After a lot of effort, I was able to get tickets for Lotte, my mum, my cousin, and myself. We were all looking forward to this a lot, including me; because of my other chronic conditions (fibromyalgia, gastroparesis, nerve pains, …) I’m very limited in everything I do, and I don’t go out often.
Since the concert in 2019 I was more sensitive to sound (I used ear plugs for things like vacuuming, drilling, …), but I didn’t really think about this. I only realized this was a mild form of hyperacusis once it became a severe case of pain hyperacusis.
This time I of course had my ear plugs with me. They were foam ear plugs with a good dB rating. This means that they were good in diminishing the noise. I was fairly assured I would be safe with this.
The concert was very loud, but with the ear plugs it didn’t seem that bad. Or that’s what I thought. The concert took about three to four hours, which is pretty long. After the concert I removed my plugs and my ears felt a bit sensitive, a bit of fullness and a gnawing feeling. I assured myself this would go away again, and everything would be fine. However, on day three everything changed. Sound started to feel very painful.
I was unable to tolerate any sound, and I had an immense feeling of pressure and stabbing pains in my ears. I started wearing ear plugs to reduce the burden. But now even ear plugs hurt, they only worsened the pressure. So I decided to look for earmuffs.
Almost two years have passed, and I pretty much have to use Peltor 3M muffs 24/7 (the type of hearing protection often used in construction). I am completely homebound and leave the house very rarely, for example for a doctor's visit. If I do go out I need to use both foam ear plugs and peltors.
I can barely talk because of the occlusion (everything sounds louder when you plug your ears, try for example to put your fingers in your ears and then talk, you will notice your voice sounds much louder). My own voice is even too loud. I used to call my mum every day, but I can no longer do this. We now do everything through typed chat.
I was already used to the isolation caused by my gastroparesis and other chronic ailments, but occasionally I could visit my family or call them. I can no longer do this, and it is rough. Daily stuff like talking to someone, a phone call, doing errands, driving a car, … have now pretty much become impossible. I wasn’t even able to go to my godmother and godfather's funerals. Heartbreaking. I wasn’t even able to say goodbye. This condition is exhausting both physically and mentally.
My partner recently started rewatching Game of Thrones. I remember the intro of this show clearly. Fantastic. One of the only shows where I never skipped the intro. On the contrary, I used to put the volume louder. Such simple things which seemed normal back then, appear impossible now.