It started with a beep in her left ear, now she hears different sounds in both ears 24 hours a day. Douwina Woudwijk (22) is distraught. “When I first heard it, I thought it was coming from outside. I looked for the device that was causing that beep, but couldn’t find anything. When I closed my ears, I still heard it: so it came from inside. I totally panicked, didn’t know where to look. I told myself it would be over the next day, but it only got worse.”
The monotonous beep of the beginning turned into different sounds. “Very annoying,” says Douwina. “Your focus and concentration disappear, it drives you crazy. I wouldn’t wish it on my worst enemy.” In her right ear she constantly hears a kind of noise tone, on the left she hears a very present up and down beep. The sound is always there, it is never quiet.
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Douwina thinks her tinnitus was caused by stress. She studies chemistry at HBO and that is known as a tough education. Exactly on the night before the toughest exam of the first year, the beep came on. And with that constant noise, studying is now only more difficult. “Especially when we were homeschooled, it bothered me a lot. If I’m not distracted, I hear my tinnitus in full force. I have to put on music to be able to concentrate somewhat.”
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Over the past two years, Douwina has tried everything to suppress the noise and beep, to no avail. She has now accepted that she has tinnitus and that it will never go away. There is no medical treatment (see explanation of neurosurgeon Dirk de Ridder later in this article, ed.). However, tinnitus patients can receive mental help to learn to deal with the sound.
Never sleep without sound again
Douwina does not dare to sleep without sound in the room, which is why she always has a fan on at night – even in winter. “Otherwise I’ll have panic attacks.” She also has a sound cushion to which she connects a speaker with ‘brown noise’, a kind of monotonous noise. That drowns out the sound she hears from within.
During the day it helps her to put on music or seek distraction outdoors. “But if I do that too much, I get overstimulated by everything and it bothers me more. It’s a shaky balance. I can’t really enjoy a night out like I used to. still so young. Fortunately, I am very positive about myself. Now that I have accepted that I will have tinnitus forever, it is much better and I can live with it.”
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“Like a circular saw going through my head”
Frank van Hoorn (64) also has severe tinnitus. He hears a permanent beep at 80 decibels, about as loud as a normal conversation. It started up about twelve years ago, then it subsided again, only to come back harder. “It started with a noise, then it became a whistle, and it got louder.”
And where initially it was only in one ear, he now hears the tone in both ears. The volume at Frank has doubled over the past five years. “I was shocked by that. I’m afraid that the tone will become even louder in the coming years, or that I suddenly can’t stand it anymore. That fear is always there. It’s terrible enough, you don’t have a moment of silence .”
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Still, Frank says he can live with it reasonably well. “As long as I make sure that my focus is not on it. For example, when I am concentrated at work, the beep is there but it does not disturb me. There are periods when it really gets in the way. Then I really can’t working, or just with headphones on to drown out the tone with music. When I’m tired or just want to relax, he’s also there loudly. Sometimes it’s like a circular saw is running through my head. It’s now and then to get mad.”
Tinnitus is not measurable
Many people become that too, says Frank, and that is a major, underexposed problem. “Some people go completely nuts. Tinnitus can be very serious. I know people who have lost their lives because of it. Others drink it away, or live withdrawn.” Frank founded the foundation TinnitusFree to raise awareness about tinnitus and everything that comes with it. “The problem with tinnitus is that it is not measurable. Therefore, it is not a formal diagnosis and the medical industry has no interest in solving it. Too little is known about it.”
Curious about the sound Frank hears all day long? Then listen to this audio clip.
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Do you have questions about suicide?
113 Suicide Prevention Foundation: bell 113 of 0800-0113 (free), or anonymously via the chat on the website 113.nl
Available 24 hours a day, 7 days a week
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More tinnitus due to corona
One fifth of all tinnitus patients – about 15 percent of the world’s population – experience it as a serious disability. That is 3 percent of the total population. For example, they suffer from sleep deprivation, anxiety, concentration problems, depression or in extreme cases suicidal thoughts. According to the TinnitusFree foundation, 1 in 100 patients attempt suicide.
Neurosurgeon Dirk de Ridder, board member at the foundation, has been researching tinnitus for twenty years. Not much is known about the causes, but hearing loss seems to be the most common trigger. “We assume that the brain will fill in missing information itself, as it were, just like with phantom pain.” Tinnitus is also more common in smokers, marijuana use, obesity, stress, high blood pressure, migraines and other conditions.
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De Ridder: “We can distinguish two major forms of tinnitus: one in which the brain produces sound and one in which the sound suppression is too low. With hearing loss, your brain tries to compensate by producing sound, but it also happens that the brain uses the sound. that we all create – unnoticed, because it is suppressed in people with normal hearing – suddenly no longer suppresses. Ringing in the ears is, as it were, an imbalance between sound suppression and input.”
Recent research suggests a link between tinnitus and the coronavirus: 15 percent of covid patients would get tinnitus. According to De Ridder, there are several reasons for this. “On the one hand, we know that the pandemic is increasing anxiety, depression, stress and sleeping problems – especially in people who have actually contracted the virus. Almost half of the corona patients have anxiety problems. That can be a trigger for tinnitus, or make tinnitus worse. if you get tinnitus during a stressful situation, such as an infection with corona, the chance is greater that it will be permanent, according to De Ridder. “Your brain then makes the link between the tinnitus and something important.”
Link met coronavaccins?
There also seems a link between the corona vaccines and the development of tinnitus. About 1 in 160 vaccinated people would have contracted tinnitus.
The number of people, especially young people, with tinnitus has increased significantly over the past ten years. De Ridder thinks that this is partly because there is more attention for it, which means that patients use it more than before. On the other hand, we are probably more exposed to (loud) noise, for example through headphones and at festivals, which most clearly promotes tinnitus.
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Avoiding excessive exposure to noise is therefore the most important way to prevent tinnitus. “We know that people who work in noise are more likely to get tinnitus,” says De Ridder. “For example, two-thirds of rock musicians have hearing loss, and a quarter of them have tinnitus. Interestingly, they usually don’t find it disturbing, because they link it to the work they like to do. In the military – who also often get tinnitus, more often even more than PTSD – it is linked to danger and risk, making it a much greater burden for them.”
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Cognitive behavioral therapy is currently the only thing that helps somewhat against tinnitus. It doesn’t diminish the sound, but the extent to which it disturbs does. You learn to deal with it, which, according to De Ridder, can lead to an improvement of 10 percent. “For all other treatments, such as hearing aids, medication, or brain stimulation, there is little to no evidence that it works for everyone – but absence of evidence is not the same as evidence of absence. The ultimate goal of any treatment must be to to be able to remove the sound itself and not to soften the burden a little bit. But for that it probably has to be measurable first.”
Enough money and attention
De Ridder assumes that this problem can eventually be solved with sufficient research, provided that there is enough money and attention. “In the meantime, practitioners like me are obliged to propose treatments via trail and error, which is not optimal, but at least better than saying ‘you have to learn to live with it’.”
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