Tinnitus patients often feel marginalized. © Fotolia

Living with tinnitus

More than 11 million people in Germany have tinnitus. Here some of them tell us their story: how it came to be and how they have been living with tinnitus ever since.

“I suffered from tinnitus for more than 8 years. One day I woke up with vertigo and didn´t hear anything. My left face and parts of my head felt numb.  It was hard, but now I can move on as usual even though the tinnitus still accompanies me until today. I am a private teacher with several students. My work gives me strength and I keep sincere and fight always.”                                                                                                                                       Rajutan, female, from Indonesia

"It all began after an emotional phone call 14 years ago. Three days of dizziness, sudden hearing loss and a noise that unfortunately would not disappear any more. I've learned to get used to it now, but over the years it became stronger and it stresses me a lot at the moment. Food supplements help a little and sometimes, in rare moments, I barely hear any sounds.  Therefore, I believe that the tinnitus should point me to something and I do not give up hope that I will be symptom-free some day."                                                                                          Annette Schmidt, 56, from Germany

“I developed tinnitus and hyperacusis while playing music in Seattle in the late 1990’s. After a long journey with isolation, pain, thoughts of suicide and trying a lot of therapies I finally got the right help. 2008 I decided to become a psychotherapist and help others. I was travelling and working in different countries and my vocational goal is to work with affected people fulltime. Believing in happiness is very important for me.”                              Jeff McBride, 49, from the USA

I´m 15 and in addition to my tics (Tourette) I have quite chronic tinnitus all the time. It started when I was 12 years old, I woke up in the night with a screaming in my ear. Then many month of problems followed: without any sleep, stress and hoping it just would be a phase. I learned to live with it - use music to fall asleep, avoid certain foods and use earphones. It not hitting me so hard anymore.”                                                                            Tom Hill, 15, from England

“My tinnitus is linked to anxiety. I try to romanticize it when it hits me, as if I was visited by a creature. I try to give it a face and a form. Anyway I wanted my pictures less depressing but things happened. This is why I create something beautiful from a feeling that is often knocking me down.”                                                                 Jasmin Gruss, young artist

“My tinnitus started about 6-7 years ago and it took me more than 5 years to admit that I need help with my hearing problem. Communicating was hard and it adds up to my personal anxiety, feeling isolated and even couldn´t enjoy music that I supposed to like. Using a hearing aid as well as family and friends support helps me and I learned to be more resilient and open about this.”                                                                                            Karin, 31, from Jakarta

“I´m 20 years old and I´ve learned about tinnitus almost a year ago when my mom got it. I couldn´t understand why she was so upset about it. It wasn´t understandable until I got it myself: I suffered from concentration and sleep problems, nightmares, and the more tired and stressed I was, the worse the high tone became. I hope the day will come when I get used to it and became more happier.”                                                                                Julie Tampierová, 20, from Czech Republic

"I got tinnitus since 2011. First it was just a high, intermittent peep. But at some point the sound didn't pass and in addition to a severe hearing loss there was also a ticking noise. Especially in silence it´s difficult for me to ignore the sound, which is why I consciously look for other background noises. That could be radio or my husband's snoring that helps me to fall asleep".                                                                                                                Andrea, 58, female

“I have severe tinnitus and trigeminal neuralgia for many years. It´s most hard in the morning because I hear a constant sound, have visual disturbances and pain. I found some medicaments that help but there is still no cure for tinnitus. My tinnitus varies with tiredness and stress. As an artist I want to show other people how tinnitus feels.”                                                                                                                                                                         Iain MacLeod-Brudenell, male, british artist and researcher

Send Iain your drawings about tinnitus to:

“I just got tinnitus after a DJ gig, about one month ago. I guess it wouldn´t happen over night - until it happened. I’m still in critical stage. I find it most difficult transitioning between active and relaxed brain states. I’ve never been great at meditation but my goal is to improve. I’m currently in a pretty hopeless place, but I know that moods and stress can change with time.”                                                                                                           Daniel, 30, male

“I was diagnosed with Menière's disease when I was 34. I had two episodes of hearing loss after having a respiratory/sinus infection. At first, my ENT doctor thought it was just sudden hearing loss, but then I started having vertigo.  I have lost 70% of my hearing in my left ear and I have constant tinnitus. It´s not easy to manage but wearing adjustable hearing aids and earplugs helps me a lot. I feel peace since I accepted my tinnitus and I try to stay positive.”                                                                                                                                                    Nichole Williams, 42, female

"In 2009, I had a strong flu accompanied by nasty noises in my ears.  My doctor said it would disappear after the flu - but it didn´t and I've got it for 10 years now, changing from quiet to loud and vice-versa. So far nothing has helped but distraction. I resigned myself to live with tinnitus forever - it even has a name: Titus Balthasar. He´s a part of me that I have accepted."                                                                                                                            Tina, 57, female

"I got my tinnitus when I was 24 years old. In addition to the constant drone, I suffer from depression and several other physical symptoms. After many years I got the diagnosis "Pseudo Tumor Cerebrie" – a cerebral pressure that is probably the trigger for my tinnitus.  Tinnitus can have various causes, mine was found very late. But the treatments and the meetings with others affected by tinnitus in self-help groups made me feel a little better."
55 years old, female

"The crackling in my left ear came suddenly and the sound hasn’t gone since then. I got a stress-related hearing loss in 2015 and have been trying to fight the tinnitus with therapies, music, sports and mindfulness exercises. I try to find out which situations amplify the sound and I still have not given up the hope of finally defeating tinnitus. The worst thing is: you can´t see whether people are affected or not."
Daniela, 36, female

"I've had bilateral tinnitus for five years. After an operation as an infant I hear almost nothing with my right ear, but I have got used to it. Only the whistling in both ears can be very annoying. So far nothing could help me and I don't feel like experimenting anymore."
Kolokotroni, female

"Tinnitus came 15 years ago and is probably the result of a bicycle accident with a whiplash trauma. I tried everything: numerous visits to the doctor, physiotherapy and psychotherapy, rehabilitation, acupuncture, alternative methods, noisers and much more. Unfortunately, nothing could help me so far, only wearing a hearing aid, spending time outside with my dog or enjoying my hobbies reduce the tinnitus. The permanent sound has changed me a lot; I live more withdrawn and am no longer resilient."
Hedda, 64, female

After a bicycle accident with five fractures in the face I´m suffering from tinnitus. That first month was the worst month of my life, it was hard to adapt to this new “ghost friend”. I believe that playing sports all my life has helped me cope with tinnitus and its levels of frustration. I want to believe that in a short or medium term a cure will help, because I have been without silence for two and a half years. Meanwhile, I keep looking for emotional and physical methods for me to get on with my tinnitus.”
Josy Manriquez, 37, from Chile

“I’ve had Tinnitus since I was 15 years old, I do not remember the days of silence nor how this started. Today, after 29 years with this friendly snail, I know that I have learned that without stress tinnitus is bearable, and that exercise and a healthy life help a lot to go through the less pleasant days. And that the family and the love that they give me is enough for me to face this every day. We need to have faith and one day there will be a cure, I am sure.”
Rony Manriquez, 44, from Chile

Meet Rony on social media:

"After a loud rock concert, I received the diagnosis noise trauma at the age of 18. The result: chronical tinnitus. I felt totally paralysed, because I love going to concerts and parties - especially because I´m singing in a few bands.  But with tinnitus, making music was taboo in the beginning. Now I only perform on stage wearing hearing protection (in-ears). I've accepted my tinnitus and don't allow it to diminish my passion for music or life."
Inge, 25, student

Meet Inge on Facebook:Living with tinnitus

"I got my tinnitus nine years ago after one of many sinus infections. In the beginning I could cope with it, but it got worse and worse until I had the feeling that my life couldn't go on like this. I suffered from depressions and withdrew more and more, quit my job and became less active. At some point I decided to follow the “Camino de Santiago” and to take my life back in my own hands. Since then I've been feeling much better and I've learned to live with tinnitus and think positively."
Maria-Magdalena Mailhamer, 33, social worker/teacher

Please find more about Maria-Magdalena:

"I've been suffering from tinnitus for 15 years. Now I'm 22, I still don't know the trigger and there aren´t any new insights from the visits to the doctor. Four years ago it became worse and in addition I couldn’t fall asleep and concentrate anymore, so I started with yoga, meditation and relaxation exercises. These and the additional weight training help me to block out the ringing in my ears for a while. I try to get through every day."
Thomas Weber, photographer