MY LIFE WITH TINNITUS
Several million people in Germany alone suffer from tinnitus. We asked affected people from Germany and abroad to tell us their personal story or visualize their tinnitus; so that others can better understand what it means to live with tinnitus.
Ascary, 46, Pittsboro (USA)
Ascary, 46, from Pittsboro (USA)
“I’ve had tinnitus for almost two years – sometimes so severe that it made me cry at night in frustration and anger. For many months I tried everything from acupuncture to meditation to diets. One day, as I lay down to sleep, the noise came, as it does every night, at a higher pitch, getting ready to take control of me and my sleep. That night I did something different. I had a conversation with ‘him’.
Tinnitus: Hi, I’m going to come in and take over.
Me: My mind and body are my temple, you can’t come in.
Tinnitus: It doesn’t matter. I come in, as I have done for so long, and check everything.
Me: … well, come in and never leave, if that is your wish, but this is my temple and in my temple you will kneel!
Since I am his master, he is always there, but he no longer controls my moods, my ability to function and sleep. I don’t know if it will ever go away, but I chose to accept it rather than fight it. That made all the difference for me. I hope other people can find a way to beat their tinnitus, too.”
What does your tinnitus look like?
Amal
Christine, 34
Christine, 34
“When I was 28, I suddenly felt pressure in my left side of my head and felt dizzy. Despite several visits to the doctor, after a few weeks I lost my left hearing and the tinnitus set in. I got more or less used to it over time. The tinnitus gets loud when I have stress or the environment is noisy. Above all, I have learned to listen more to my body. This year I went to a festival for the first time in a long time. I got myself some earplugs and I’m thrilled. It muffles the music and you can still hear people next to you talking just fine.”
Antonia, 65, Cologne
Antonia, 65, Cologne
Antonia has been suffering from bilateral tinnitus for more than 5 years. The fact that she hears almost nothing on the right doesn’t bother her too much, because she’s been able to get used to that all her life.
The whistling, on the other hand, which she has been noticing in both ears for quite some time now, can be quite annoying. Unfortunately, the health insurance does not pay for a therapy that uses noise suppressors, which are supposed to drown out the tinnitus with the help of “counter noises”. She would like to have such a treatment, however, she has become so used to it by now that she doesn’t really have much desire to experiment anymore.
What does your tinnitus look like?
Magda
Rajutan, 45, Indonesia
Rajutan, 45, Indonesia
“I have been suffering from tinnitus for more than 8 years. One day I woke up with nausea and heard nothing. My left face and parts of my head felt completely numb. It was very difficult, but today I can live my life again as usual, even though the tinnitus has been with me continuously since that day. As a private teacher of several students, I remain confident and fight.”
Jasmin, 24, Berlin
Jasmin, 24, Berlin
Jasmin is still very young and her tinnitus often frightens her. Accordingly, she suffers from anxiety and this, unfortunately, amplifies the tone in most cases.
To deal with it better, she has developed an unusual technique: she imagines that the tinnitus has a shape. It then feels to her something like being visited by an alien creature. This kind of romanticization makes it easier for her to turn otherwise depressing feelings into something positive. She likes to paint, and there she also likes to unleash her creativity: she gives her tinnitus a face and a shape, sometimes in the form of a hummingbird buzzing around her ear, sometimes in the form of a whale reminding her of depth and sadness. She always finds new ways to express her feelings in drawings. Sometimes she wishes her images were less downbeat, but “that’s just the way it is,” she says. Nevertheless, she tries to make something beautiful out of what usually scares her more.
Daniel, 30, Munich
Daniel, 30, Munich
Daniel is 30 years old and has his tinnitus probably due to too much noise exposure. A month after a DJ performance, he wakes up and the sounds are there, all of a sudden and without warning.
Dealing with this is still difficult for him and he is still in a phase that he himself describes as “critical”. He finds it difficult to relax – and to simply switch off his brain, both actively and passively. He’s never been good at meditation, but he’s eager to improve at it. Right now he feels pretty helpless, but he knows that moods and stress change over time. The thought that time will probably help gives him some hope.
What does your tinnitus look like?
Sonja
Jason, 24, Los Angeles (USA)
Jason, 24, LA (USA)
“I got my tinnitus as a result of barotrauma, damage to the eardrum membrane from rapid pressure changes. I have the noise in both ears, and it is constant. There’s nothing you can do about it except get used to it. At first it seemed impossible. I was filled with a deep sense of helplessness and hopelessness. I just wanted the noise to stop. I tried to force myself to be strong and kept failing. But here I am. I underestimated myself. Now I can hardly hear the noise. Not because it’s not there, but because my thoughts (mostly) adjust to turn it off, and because I’ve come to terms with the noise. Maybe overcoming that hurdle and being happy and grateful for my life as it is is the best highlight I could have ever asked for.”
Nilgün, 34, NRW
Nilgün, 34, NRW
“When I’m painting, I often forget that the tinnitus is there.”
What does your tinnitus look like?
Brigitte Eva Maria
Iain, 65, London
Iain, 65, London
Iain is a British artist and researcher who has suffered from tinnitus and trigeminal neuralgia – a form of facial pain that occurs due to nerve irritation – for several years.
Along with the tinnitus, it especially bothers Iain in the mornings because, in his own words, that’s when it’s worst for him: “I hear a loud, continuous sound then and suffer from visual perceptual disturbances as well as pain.” Medication usually helps against this, but he has not yet found a permanent solution for the tinnitus. He has seen countless doctors over the past decade, but has not received the help he wanted, instead often feeling that tinnitus is dismissed as insignificant and easy to cope with. As a sufferer, however, he knows only too well how many areas of life can be affected by ringing in the ears and therefore wants to generate more awareness for the topic with his art and his work. With his drawings and paintings he tries to visualize his tinnitus, but also to express the feelings of others who also suffer from it. He tries to include people with hearing problems as well as those with various forms of tinnitus.
What does your tinnitus look like?
Iain MacLeod-Brudenell
Jochen, 57, Frankfurt a.M.
Jochen, 57, Frankfurt a.M.
Jochen Schmidt* has been suffering from tinnitus for twelve years. To make matters worse, he has also been diagnosed with Attention Deficit Disorder (ADD). Thus, he not only has to live with “annoying ear noises”, but also with the fact that he often cannot concentrate on anything properly.
The consequences are serious: Jochen Schmidt has been on sick leave for many years. He can no longer pursue his work; and at times he is afflicted by severe depression, which extends to suicidal thoughts. The tinnitus makes him angry again and again – in view of his defenselessness and as a result of the pain.
A caesura was the birth of his child. This gave him new strength to develop his own tactics against tinnitus. His goal is to learn the “inner smile”. Hours of meditation and physical relaxation exercises help him: “A clear peaceful mind is important. This is my tactic against tinnitus.”
Anne, 45, Hamburg
Anne, 45, Hamburg
“The tones have become the little sisters in the ear”.
Ingrid, 44, Mannheim
Ingrid, 44, Mannheim
Ingrid is 44 years old. She got the tinnitus more than 15 years ago from Pfeiffer’s glandular fever. The family doctor had reacted too late, and when Ingrid was sent to the ENT doctor, she was advised, “You’ll have to get used to it!”
Later, an inner ear hearing loss was discovered, which finally explained why she had so many learning and speech problems as a child. She has had the tinnitus “well under control” for about four years: “The beeping is no longer the enemy as it used to be. Instead, I now see a person sitting in my ear: He sits there with his trumpet and laughs in a very friendly way.”
She has also had the experience of people turning away. But others are now there who accept “when I pull back sometimes, when I’m in a bad mood or when I’m sad.” And crucial is the support of the spouse: “My husband has compassion, but he understands me too!”
Nine years ago, her son was born. During pregnancy, a low-pitched sound suddenly set in in addition to the tinnitus – “a buzzing, as if the eardrum was vibrating.” Ms. Herrmann reports sweating and anxiety attacks. This buzzing sound masks the tinnitus beep. Doctors have given her hope that the sound will go away.
What does your tinnitus look like?
Evi
Thomas, 61, Rügen
Thomas, 61, Rügen
In one ear it is a loud hum, in the other a continuous beep. Thomas Weber has been suffering from tinnitus for 15 years. He does not know the trigger, only an inflammation in the ear during his childhood he can remember. He perceives the sounds primarily when falling asleep or in quiet moments.
In the last 4 years, his condition worsened, and he also had problems with concentration, insomnia and a drop in performance. The GP visits did not bring any new findings or improvements, yet he is starting yoga on the advice of an ENT specialist. The sport as well as additional strength sessions, meditation and relaxation exercises help him block out the noise for a while. Nevertheless, the sound is now clearly audible at all times of the day and is aggravated by external influences. When he goes to concerts, he always uses earplugs, but the guilty conscience remains. He finds it difficult to perform at work and often has to explain his lack of concentration to his employer or friends. “You try to get through the day,” he says, hoping that by publishing his story, other sufferers won’t feel so alone.
Romina, 39, Leverkusen
Romina, 39, Leverkusen
Romina is 39 years old. She has been suffering from tinnitus for only a short time, a little longer than half a year. At first, she didn’t know how to deal with it because she had never come into contact with tinnitus or hearing problems before.
She lay awake for nights and couldn’t block out the sound, then woke up in the morning with a severe headache. When concentration problems were added during the day, she began taking sleeping pills to at least get her rest at night. In addition, she took antidepressants, which still bring her a lot of relief at present. She is not proud of taking the medication, but it helps.
For some time now, however, she has been noticing a process, and in the meantime she can confidently say that she is slowly learning to cope with it. Instead of feeling permanently depressed and trapped, she manages to pay less and less attention to the tinnitus and focus more on her life again. She also wants to stop taking sleeping pills soon.
Nicole, 32, Berlin
Nicole, 32, Berlin
“When I accepted that I had tinnitus and hearing loss, I felt a sense of peace.”
Karin, 57, Jakarta
Karin, 57, Jakarta
“It took me 5 years to admit to myself that I needed help.” Karin from Jakarta has had tinnitus for almost 7 years. She was diagnosed with moderate hearing loss at the time, but at that time she doesn’t want to admit that she needs help with her hearing problem.
Communicating with others was very difficult for her and she was always overcome with anxiety, which she had to deal with all by herself. She felt isolated and her favorite music, which usually helped her get through hard times, she could no longer enjoy because of the tinnitus. After finally seeking help, she has now been wearing a hearing aid for a year, which helps her in many situations. “Tinnitus is still a persistently noticeable sound for me, but I’ve learned to be more resilient and open to the issue.”
In particular, the support of family and friends help her cope with tinnitus. In addition, she constantly strives to improve, educates herself when she realizes she is falling back into old patterns, and keeps herself informed. In her region, there has been a community of deaf people and people with hearing problems for some time, in which Karin feels comfortable and which gives her interesting new insights.
What does your tinnitus look like?
Ellen
Peter, 75, Bristol (UK)
Peter, 75, Bristol, UK
“I had to accept the tinnitus – it may sound crazy, but it worked for me.”
Corin, 33, Melbourne (AU)
Corin, 33, Melbourne (AU)
“I’m not going to give up trying to get better.” Corin, 33, from Melbourne, Australia really appreciates reading other people’s tinnitus stories, so she decided to share her own. “If just one person feels less alone, that’s already a success,” she says. As a working mother of 2 who has tinnitus and hyperacusis, she is quite busy – so her words show all the more strength.
“I first had tinnitus and hearing loss when I was 7 years old. After a few months, the tinnitus disappeared. Twenty years later, I went to a noisy gymnastics class and my ears rang all day. That weekend I woke up with tinnitus and hyperacusis and couldn’t hear much. Fortunately, the hyperacusis has gotten better over the past 2 years, but I still have a great fear of noise. Steroids have helped to hear again, but I still have loud tinnitus. I now have 2 children and have managed to keep my job, but every day is a challenge, especially in the social field. I always carry earplugs with me. I’m not going to give up trying to get better.”
Damla, 36, Würzburg
Damla, 36, Würzburg
Damla is 36 years old and has been suffering from tinnitus since early 2019. Before she fell ill with it, she had never even given it a thought in her life.
Accordingly, the tinnitus came suddenly for her. After suffering from severe continuous stress for about 3 years, which had its cause in health problems in the family, Damla’s body also went on strike and reacted with a strange noise in her ear, which would not go away since then. She went to the doctor, who diagnosed her and prescribed infusions – they just didn’t help, unfortunately. So she had to go through a pretty bad first month that took a lot out of her. However, she quickly noticed that the exchange with other sufferers was good for her and so she is learning to deal with her tinnitus better step by step. In particular, working with her physical therapist made her feel an improvement – he helps her loosen her cervical vertebrae, neck and jaw. She further tried traditional Chinese medicine, but nothing helped her more than her positive and realistic attitude: “I think accepting the tinnitus and believing that things will get better helps me the most.” And a little more confidently, she adds: “The noises are still there, but I hardly notice them anymore. And when I do, I just tell myself, ‘I don’t care, I’m living my life either way!’ The tinnitus can’t drag me down!” Damla is proud of her newfound strength, and precisely because she knows how hard it can be at first, she recommends that everyone get help: from other sufferers, friends and family. Together, you find a way to deal with it.
What does your tinnitus look like?
Shirley
Hedwig, 45, Hamburg
Anne, 45, Hamburg
“My tinnitus has been with me for 21 years and it is an underlying stressor, but it doesn’t hurt or prevent me from socializing. On the contrary, something like that distracts from the annoying whistle, and then it’s hardly noticeable.”
