What is it like to live with epilepsy

Living with epilepsy: those affected describe their everyday lives

Lying on the floor, shaken by convulsions, completely losing control - this is the typical picture many people have of epilepsy. Affected people tell what their everyday life really looks like.

The case of Sybille Burmeister

Like a hand inside the body that reaches for the heart from the abdomen. Sybille Burmeister twists her arm in front of her chest to show what the strange throbbing in the heart region felt like that she had had over and over again since her youth. In addition, there was dizziness and a buzzing in the ear. It was eerie and annoying, as she says, but no doctor ever discovered anything unusual in her heart.

Then came a day in 2006, Burmeister was 35, when she passed out on the balcony. When she came to, she was lying in the guest room, bleeding from her mouth, had a "violet" on her eye and pain everywhere. What was that?

After visiting the family doctor, a clinic and finally the neurologist, the answer was found: an epileptic seizure. Burmeister was given a drug that also made the palpitations less common. This made it clear that she may have had minor seizures since the age of 15.

It is the large so-called generalized seizures that Burmeister experienced on the balcony that are typically associated with epilepsy: The person affected falls to the ground, twitches, and becomes unconscious. In the whole brain, many nerve cells discharge at the same time due to a disruption in the central nervous system. But the range of types of seizures is wider. Sometimes they only affect a certain part of the brain and so do not always lead to a physical breakdown.

Cause of epilepsy

Epilepsy can be caused by congenital or acquired brain damage. For many, the reason is unknown. A prerequisite for the diagnosis is that multiple spontaneous seizures occur. If doctors find a point in the brain from which they originate, operations are also possible under certain conditions - in a total of around five percent of the sick, says the medical sociologist Norbert van Kampen from the Epilepsy Center Berlin-Brandenburg. The proportion of those in whom seizures are triggered by optical stimuli such as flickering lights in the club is also very small.

For Burmeister, the diagnosis came out of nowhere. It is one of around 500,000 people affected nationwide, according to estimates. The journalist from Ludwigshafen felt completely alone with the illness at the time, depression and even burnout were the result. A sword of Damocles still seems to hover over her, says Burmeister. She has to pay attention to a relatively large number of things, is dependent on medication for life and is always not allowed to drive a year after a major attack.

"Live pretty normal in treatment"

But their conclusion is different: "If you are treated well, you can live with this disease quite normally." As a board member of the German Epilepsy Association and its spokesperson, Burmeister is now committed to providing information about the disease, has set up a self-help group and wants to fight against prejudice. "It is important to me that this stigma that is still connected with the disease is overcome one day."

Because Burmeister experienced hurtful reactions when she mentioned her illness. Some of them backed away a little at first, as if it were contagious. Her impression: "Some think that one is inevitably a little mentally poor." Still others showed astonishment that you couldn't tell. "But what should I look at?" Asks Burmeister. The term "epileptic" has a negative connotation, not only for them, because the disease is equated with humans.

Dealing with the disease

Surveys show that the perception of the disease has changed somewhat in recent years - fewer people consider epilepsy to be an intellectual disability than 20 years ago. However, Norbert van Kampen's experience shows that for some of those affected it would mean the end of their career if they talked about it. Some didn't even tell their partner about the diagnosis.

One is often confronted with wrong ideas, says Stefan Conrad, who in his youth had major seizures about twice a year. It is often surprising for outsiders, for example, that those affected do not have to constantly limit themselves in everyday life and that many patients are often free of seizures for long periods - in Conrad's case, it is twelve years, as he says. Before medication helped, he had seizures after getting up, which were preceded by twitching in his arm or leg. So he could often lie down in time.

Treatment of epilepsy

The motto of Epilepsy Day on October 5th - "Epilepsy can be treated well - for how much longer?" - is dedicated to the concern of patients that wrong political decisions could make the approval and thus access to new epilepsy drugs more difficult.

In addition, it is clear to those affected as well as to Norbert van Kampen that there should be more specialized counseling centers in Germany to support people after a diagnosis in social and medical terms. The way to the epileptologist and to special centers is not yet the order of the day. Van Kampen says: "There are those affected who have lived with epilepsy for 20 years and have no idea what they actually have." No patient and no epilepsy are like the other, emphasizes Burmeister. "That makes drug treatment so difficult. It's always trial and error."

Important NOTE: The information is in no way a substitute for professional advice or treatment by trained and recognized doctors. The contents of t-online cannot and must not be used to independently make diagnoses or start treatments.