Living with Morbus Ménière

Morbus Ménière is a diagnosis I received in 1996. It is a chronic disease. This means that I will not die of the disease - but I have to live with. To live with such a chronic disease requires a lot of effort from myself. Medical science can help me only to a certain extent. The rest I have to do myself in order to be able to live with it. How does the sickness effect my daily life ? The photo below, which I have called Vertigo, speaks for itself. It's like an alien landscape. To begin with, very scary. You lose ground, lose a fixed point of gaze, lose your hearing, and you lose control of your body. I have now been in this landscape for so long that it is no longer scary. We have become companions and not enemies. It has been important for me to live with it. Some say that there are 5000 people with this disease in Norway. Others have calculated that we are about 40 000. Everyone with Morbus Ménière disease experience the sickness differently. I wish to write a little bit about how the disease manifests itself for me.

Vertigo. Photo: Kaare T. Pettersen

Morbus Ménière is a disorder of the inner ear. Here we find the labyrinth and the cochlea, being only the size of the nail on your little finger. The main function is hearing, balance and equilibrium. They are full of liquid and the walls inside have hair cells that capture audio signals and balance signals. With Morbus Ménière there is too much fluid in here so that the pressure increases. The pressure destroys many of these small sensory hairs cells, so that it affects hearing and balance. The disease involves having attack of severe dizziness, tinnitus, and hearing loss. The disease was described for the first time by the French physician Prosper Ménière (1799-1862). He wrote a scientific article in 1861 called "On a particular kind of hearing loss resulting from lesions of the inner ear." Here he documented that the disease is characterized by tinnitus, vertigo and hearing loss. However, he had no explanation as to why the disease occurs. Research today emphasize explanations that have to do with inheritance, environmental issues, or viral infection.

When the road stops Photo: Kaare T. Pettersen

With me was disease seems to be caused from stress. I'm pretty convinced of this. I had en ear infection for many years when I was a child, so it is possible that this created a weakness in my inner ear. I don't know. What I do know is that I worked in Child Welfare and had many very difficult cases to work with when I got the disease. I got up one morning to go to work and went into the bathroom. He I got my first sudden vertigo attack. I had to go back to bed and lie down, clutching to the mattress for several hours. This was my first Ménière attack. For several years after that I had these seizures several times a week, in periods every day. After 5 years, the attacks began to diminish in frequency and strength. In the next 10 years I could work normally and was not sick a single day. Suddenly one day, while I was at work, I got Ménière attacks again. I was than in a period with extremely heavy loads of work and I was too optimistic in their my abilities. Now I have again about 3-4 attacks every week .

As a rule, I can now feel that a seizure is about to come. I hear that my tinnitus is increasing, I feel like I have cotton in my ears, sometimes I feel a pressure in my head or become nauseous. The attack comes like a sudden punch in my face. It's like being on a carousel that goes around very fast. Around and around. Sometimes in a half hour, sometimes for several hours. It is not possible to stand upright during a seizure. I have had such attacks in the city, the store, in the forest, and on the train platform . Wherever I am I need sit down. Although it is difficult just to sit. No one notices me when I sit on the curb or with your back against a wall. No one can see that I am having a seizure. However I'm ussually at home when the attacks come and I can lie in bed. I pull the curtains to prevent the sunlight  coming in, it's nice to have darkness under the attack. Seizures usually lasts for an hour, but sometimes they last longer. After the attack I feel nauseous, I'm tired and have a headache. The ringing in my ears is devestating. Usually, I sleep for several hours after a seizure. And I may be tired for days afterwards.

The feeling of having control over life is important to everyone. However, many feel that they lose this control because of various factors, including disease. This has been a challenge for me too. I do not know when the attacks come, my tinnitus is with me constantly and hearing is becoming worse. It is a challenge to take control back. Exercise is important to me. As often as I can I go for long walks and then I have a camera with me. I love to take pictures and try to let the photos say something about how I feel. This makes photography an important therapy for me. Therapy has to do with finding words on ones difficulties. Sometimes words are inadequate, and that is why pictures help. Also -it's nice to hear that others think the pictures are beautiful.

Pulling the boat ashore Photo: Kaare T. Pettersen

Living with Morbus Ménière is experienced differently from person to person with the disease. Many people experience anxiety, depression, social withdrawal, disability, and various forms of social and physical pain associated with the disease. I share the feelings you all have with Morbus Ménière. -But you must find a way to live with the disease as best you can. My advice is to be open about the disease. Talk to your family about it. Talk about it at work. Share it with others. Do not let the disease inflict a sense of shame. This is a big challenge in a society where having a disease is stigmatizing. I have tried to become friends with my Ménière, I avoid silence in order to give my tinnitus a different tune, and I try to see the positive sides of my hearing lose. To see beauty instead of what is perceived as an evil is not easy. Sometimes it is not possible. But life's challenge for us all is to try to do the best we can.

Kaare T. Pettersen