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.

Sandra, Bavaria, Germany

"I used to think that tinnitus couldn't be as bad as everyone says.  I often had ear noises as a teenager that came and went. First time realized the real meaning of tinnitus was when the whistling sound stopped leaving.  I am still suffering from insomnia and low self-esteem. But I have accepted tinnitus as a permanent partner and I do not let it limit me. Especially the job change and psychological support have helped me a lot - the tinnitus is much quieter now and I can sleep much better.”

Silvie, 33, Bamberg, Germany

 

“My tinnitus story starts with a car accident. Triggered by a severe blast trauma, I’m suffering from tinnitus and severe dizzy spells which are challenging me every day. I have lost my job as an intensive care nurse - my dream job – and can no longer hear some sounds. I have not yet found a way to deal with it. However, I do not want to accept this situation and will not give up the fight to live a normal life again!”

 

Ascary, 46, Pittsboro, USA

"I’ve had Tinnitus for almost two years now – so severe at times I’ve found myself crying at night with frustration and anger. For many months I tried everything, from acupuncture to meditation and diets. One day as I lay down to sleep the noise came as it did every night, at a higher pitch, getting ready to take control of me and my sleeping. This night I did something different, I had a conversation with 'it'.

Tinnitus: Hey there, I’m coming in and I will take over.
Me: My mind, my body are my temple, you can’t come in.
Tinnitus: It doesn’t matter. I am coming in as I have for so long and control everything.
Me: ... fine, come in and don’t ever leave if that’s your wish, but this is my temple and in my temple you will kneel!
Ever since I have been its master, it is always there but it no longer controls my moods, my ability to function and sleep. I don’t know if it will ever go away, but I decided to accept it instead of fighting it. That made the difference to me. I hope people can find a way to beat theirs.

Jason, 24, Los Angeles, USA

"Trauma. An event that falls outside the range of normal human experience. Habituation. A form of non-associative learning in which an innate response to a stimulus decreases after repeated or prolonged presentations of that stimulus.Few people know that I have something called tinnitus. The perception of noise or ringing in the ears that’s not due to any external source. I got mine as a result of otic barotrauma, damage to the tympanic membrane caused by rapid changes in pressure. I have it in both ears, however it is worse in my left ear. For almost the past two years, I’ve experienced a ringing akin to a whistle going off in my ears. It is constant. There has never been a second without it and it will stay like that for the rest of my life.Tinnitus can cause insomnia, difficulty concentrating, poor work or school performance, irritability, anxiety, and depression. It can be severely psychologically distressing. There is nothing that can be done about it. The only thing to do is habituate.

At first, it seemed impossible. I was filled with a deep sense of helplessness and hopelessness. I just wanted the sound to stop. I tried to force myself to be strong and I failed repeatedly. I didn’t think I could do it. But here I am. I’ve proved myself wrong. Most of the time now, I barely even hear the sound. Not because it’s not there, but because my mind has (mostly) adapted to tune it out. White noise and fans are helpful when necessary. But mostly, because I’ve made peace with the sound. Sometimes I’ll sit and listen to it and then I’ll smile to myself and think, 'ok, I hear you’re still being a bitch'.Mentally I was wrecked for a long time. I’m thankful for all my friends who made me smile and feel joy in one of the most challenging times. I’m thankful for my life, which I truly love. And I’m thankful for myself. I’ve debated about whether to talk about this part of my life. But my life isn’t just flying to foreign places and watching pretty sunsets. Those are the highlights. Or, just maybe, overcoming this hurdle and being happy and grateful for my life the way it is, is the best highlight I could've ever asked for."

Christina, 34, Bergheim, Germany

"At the age of 28 I suddenly felt a pressure in my left head and I was dizzy. Despite several visits to different doctors, after a few weeks I lost my left hearing and the tinnitus started. I got more or less used to it over time. The tinnitus becomes loud when I have stress or when the environment is noisy. Above all, I learned to listen more to my body. This year I was at a festival for the first time in a while. I got myself earplugs and I´m amazed. The music is muted and you can still hear people talking next to you."

Corin, 33, Melbourne, Australia

"I first had tinnitus and hearing loss at age 7. After a few months the tinnitus went away. 20 years later I went to a loud gym class and my ears were ringing all day. That weekend I woke up with tinnitus and hyperacusis and I couldn’t hear much. Luckily the hyperacusis got better but I still have the severe anxiety of sound. Steroids helped me hear again but I still have loud tinnitus. I have 2 kids now and have managed to keep my profession, but every day is a challenge, especially socially. I always carry ear plugs on me. I won’t give up trying to get better until the day I don’t hear a pipe screeching 24/7."

Nilgün, 34, Germany

"I had a hearing loss 6 years ago and couldn't hear in my right ear for a few weeks. When I could hear again, it started beeping. After a cortisone therapy it briefly got better. But since two weeks the tinnitus has started again. I know that it can disappear sooner if I stop stressing myself and don't get depressed. But sometimes it drives me so mad. I am an artist and when I paint I often forget that it is there. It helps me to spend time with people I like. My cat helps me and of course art. I see tinnitus as a sign of warning: my body wants to tell me that I am doing something wrong. Then I try to slow down."

Peter J. Beckett, 75, England

"I started playing guitar in my teens - got the electric guitar and amp, started a band and off we went. We had to play loud, at least number 11 on the volume control. When the rock festivals grew, I worked every August bank holiday front stage at the Reading pop festivals. We had no hearing protection back then - can you imagine the volume? The ringing in my ears for days afterwards! Eventually it took its toll, and now years later here I am, with hearing loss and tinnitus.  Over twenty years ago, I went on a self-hypnosis course - just to stay calm, and then I found that I could use it to handle tinnitus. The one important aspect of self-hypnosis is always being positive, never negative, so you can’t say ‘it isn’t there’ or ‘I can’t hear it’, because your subconscious will come back at you and say: oh no you don’t, it’s still here.  It has taken a long time, but by having an attitude of saying ‘I know you’re there, it isn’t a problem, I’ll just accept it all and get on with my life’ has made life very comfortable. I had to accept the tinnitus and encourage it into my life - it might sound crazy, but for me it’s worked. Today I also use Mindfulness.  Now writing this I can hear the sound loud and clear. Well, not clear, more like a high pitched whistle running around in my head, but when I press the send button and go into the other room it’ll be gone. Of course it won’t have gone, but I won’t hear a thing. A bit like control-alt-delete. A sort of silent friend but I’m in charge, and it’ll stay that way!"

Damla Yildirim, 36, Germany

"My name is Damla. I am 36 years old and till January 2019 I had never thought about Tinnitus. After three years of massive stress, as a consequence of health issues in the family, I recognized a strange noise in my ears. I went to the doctor, got an infusion but it didn‘t help. The first month was the worst, my Tinnitus held me down 24/7. After that I started to reach out to people in the same situation and - step by step it got better to deal with the T! I went to the physiotherapist and after a time I noticed a futher improvement! After that I tried traditionell chinese medicine. Bit I think the way of accepting and believing that it got better helped me the most! Now it has been 6 months of having Tinnitus and I care less about it every day! The noises are still there but I tell myself: "So what, Tinnitus! I am living my life anyway! You are not going to put me down again!" I know how hard it is at the beginning, but somehow with the help of people with Tinnitus, family and friends I got my strength back!

Rajutan, Indonesia

“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.”

Annette Schmidt, 56, Germany

"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."

Jeff McBride, 49, USA

“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.”

Tom Hill, 15, England

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.”

Jasmin Gruss

“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.”

Karin, 31, Jakarta

“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.”

Julie Tampierová, 20, Czech Republic

“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.”

Andrea, 58, Germany

"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".

Iain MacLeod-Brudenell, British artist and researcher

“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.”

Meet Iain here:
Facebook: https:// www.facebook.com/iainmagnus1947

Daniel, 30, Germany

“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.”

Nichole Williams, 42

“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.”

Tina, 57, Germany

"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."

Anonymous woman, 55, Germany

"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."

Daniela, 36

"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."

"Kolokotroni" (anonymous woman)

"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."

Hedda, 64, Germany

"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."

Josy Manriquez, 37, Chile

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.”

Rony Manriquez, 44, 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.”

Meet Rony on social media:
https://www.instagram.com/tinnitus_en_chile/

https://www.facebook.com/TinnitusenChile/

Inge, 25, Germany

"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."

Meet Inge on Facebook:
https://www.facebook.com/KoertKabein/
https://www.facebook.com/WildOnes.PureRock/

Maria-Magdalena Mailhammer, 33, Germany

"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."

Please find more about Maria-Magdalena:
Blog: https://thetinnituslife.com

Facebook: https://www.facebook.com/thetinnituslife/

Instagram: https://www.instagram.com/tinnituslife/

Thomas Weber, Germany

"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."

Meet Thomas via instagram:
https://www.instagram.com/thomasweber315